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» LymeNet Flash » Questions and Discussion » Medical Questions » Porphyria?

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Author Topic: Porphyria?
katrinab
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Hello I am
Still battling what I think to be Lyme. I have taken antibiotics for five years and they didn’t help. I am trying to get to the bottom of why I am still sick. Doctors have not been helpful. If I go to a lyme doctor around here they just give antibiotics and do not look into why I have been sick. Here are a few things that have been off in my blood work through the years:

Low creatinine in urine

Albumin, alt, and ast have gone up and down these are liver tests

Cd 57 has been low until I started bee venom therapy

I have had a porphyria test that showed I had high levels of coproporphyrins iii which can mean I believe, that I am toxic from Lyme, or it could be genetic, or according to dr k it could be lead poisoning as well as a need to address kpu with minerals. What’s interesting is that no matter what the cause I am supposed to avoid certain drugs such as antibiotics which wasn’t explained to me so I have been taking abx all these years and possibly making myself sicker. Ugh. Please if anyone has had this or did the kpu test that dr k recommends let me know if treating kpu has been helpful. I don’t believe I took enough of the minerals to make a determination about this piece.

High ANA
Low c3a
High c4a

High lymph’s off and on

High antibodies of babesia microti, eppstein Barr, and hhv6. I had 3 bands also positive on wb . All these were through labcorp. Just recently I had an igenex test and Lyme tests was negative but babesia microti indeterminate it said. This is after years of treating though so I can’t say if that affected antibodies.

I need to get to the bottom of this. I can’t work anymore and am on disability. I have treated going on 7 years now. I have been treating with bee venom for the past year and it is the only thing to raise my cd57. But my symptoms have not improved.

I am tired all the time with joint muscle and bone pain. Sleep ten hours a night. Really stiff neck. Like I said doctors haven’t found anything wrong really. I have tried antibiotics, herbs, ozone, Artemisinnin, all the babesia prescription meds except quinine. Iv antibiotics.

Tried it all I think except for stem cells and hyperthermia. Am I a rare case? Or are there other people out there like me who aren’t getting better from Lyme? I think I have got to have some kind of immune dysfunction.

I tried to think well maybe it’s heavy metals or immune problem. I had gamma globulin panel done in case I needed ivig. All came back normal. Heavy metal hair test showed moderate levels of lead tin and titanium. Nothing crazy.

Heavy metal test did show I was excreting a lot of selenium, zinc, molybdenum, and manganese. This is in line with dr k theory that 80% of people with Lyme have this pyloluria, or kpu. But that Ian just a piece of the puzzle he says. Any thoughts ?

Posts: 723 | From boston,ma | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
Brussels
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Katrin, sorry about your situation...

Dr. K has warned that new chronic cases cannot heal any longer with abx. Only acute cases are reacting with cocktails of abx, he says.

Those good times are gone.

A greatest piece of the puzzle is electrosmog, he says. I know that I fell ill in a bedroom full of esmog.

I still hide from it, up to this day. If I sleep there again, without protection, I get ill in about 5 days or less. Something comes and makes me ill. Infection, usually.

We tried to treat KPU many times in the past, but only got sicker: zinc made us ill.

Only now, years after, we solved the zinc puzzle by training the body to take it again.

If you can take zinc and the other supplements, it could be a way to start treating the KPU?

It's not that hard, you just have to couple it with binders - because toxins will come out, you can be sure.

I would try other treatments, give abx up (that's what I would do), start with sauna (in case you feel you can do it)...

I don^'t think you are a rare case, just a normal case.

do you have dead teeth, amalgams, etc?

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
katrinab
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I am just starting to treat the kpu again. Taking more rna. I did before . It’s hard to know what’s gen right dose. I see that it is reccomended to take 6-10 capsules a day and then test zinc, copper and cerrullopolasmin to see if your levels are normal after taking for so long and then adjust based on results. Does that sound right?

So hard to figure this out on my own but I have to because i have been told by doctors around here who know very little outside or treating with antibiotics Thayer I have to try other things.

I get my teeth cleaned regularly and I have had panoramic x rays and they cannot see any cavities and I never had any amalgams. Got rid of my great implants. I don’t have anything else in my body.

I read dr k cured himself and his family with BVT but he doesn’t try to push it on his Parker s because it isn’t something that he can sell to them (the bees work best when alive, not when venom is extracted because it loses potency) and people are opposed to using live bees as it’s scary to them and he could maybe be sued too I would imagine if they had anaphylaxis.

My cd57 is now in the 200s so that is encouraging I think. I don’t feel much better. But I also read according to dr k that you have to sting based on weight but Ellie lobels Facebook group reccomends 10 stings for everyone regardless of weight. According to dr k guidelines I should be using a bit more stings, actually 15 stings instead of 10. I am afraid to bump it up though because I have heard that dr k has been too aggressive in his treatment with some patients and some people are permanently injured. Only a couple people I have heard this. Ellie Lobel has reasoning why she doesn’t do more than 10 stings for everyone.

She says that more venom is harder for the kidneys and liver to process and there is a component of the venom that is very similar to hydrocortisone but is a 100 times more powerful( which is why bee venom works well for pain relief) but at high levels too much corrisol can have negative effects ( can’t sleep at night, lowered immune system, can cause cushings syndrome etc) so her reasoning makes sense I just know if she has done enough research to find the right dose and it also does seem to make more sense to base any treatment on weight like we do with medications, however some medications are also not dosed based on weight as well.

I had hoped for bee venom based on Eva sapis research. Do you think treating kpu is the missing piece possibly? Maybe u should keep trying BVT with the addition of treating kpu. There is also the possibility that BVT does not address coinfections such as babesia. I have read from people that intramuscular artesunate injections have been helpful for those with babesia.

Posts: 723 | From boston,ma | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
Keebler
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-
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91842?#000000"

what type of M.D. tests for PORPHYRIA? Includes detail about: HPU / KPU . . . .

Some links here are expired yet you can find the detail by searching with article titles / authors -- and of course sites for organizations.

One key to porphyria is to not fast. Fasting can create a very dangerous situation, possibly life-threatening. It is essential to keep a steady blood glucose level.

another key: certain Rx can trigger porphyria. It is vital to avoid agents that trigger porphyria (and chemicals in products can do this, too - even vehicle exhaust, air pollution, etc.).

Different porphrias have different characteristics. Some require avoidance of the sun.

Spirulina often helps. More detail inside of the thread.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Told you I was sick
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katrinab-

“I am still battling what I think to be Lyme. I have taken antibiotics for five years and they didn’t help. I am trying to get to the bottom of why I am still sick. Doctors have not been helpful. If I go to a lyme doctor around here they just give antibiotics and do not look into why I have been sick.”

............................

“I need to get to the bottom of this. I can’t work anymore and am on disability. I have treated going on 7 years now....But my symptoms have not improved.”

I AM IN YOUR SIMILAR BOAT. TREATED FOR YEARS, GOT A BIT BETTER. STOPPED TREATING AS MY BODY NEEDED A BREAK. THIS CAUSED ALL HELL TO BREAK LOOSE AND NOW I AM IN A HUGE MESS. PLUS, WE BOTH RESIDE IN NEW ENGLAND, AND I’M ON SSDI, TOO. WE SHOULD CONNECT VIA PM.

I hope that others can chime in with some helpful info. for you.

Best,
Told you...

Posts: 315 | From Negative (-) to positive (+) | Registered: Nov 2011  |  IP: Logged | Report this post to a Moderator
Keebler
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katrina,

another note about porphyria is to avoid / prevent constipation at all costs - with diet and key nutrients (magnesium) or herbal supports (Rhubarb 17, Seven Forests . . . or Triphala).

It often just won't help to "treat" with doctors that are just so-so or mediocre. And, even with the most expert "real" LLMDs, it can be very frustrating in all the elements required for a treatment plan.

As you wonder, of course, identifying all the possible elements or variables is likely an important step back to reassess what might be missing from the action plan.

You might also consider rife machine
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91327?#000036

Topic: How did Burrascano cure himself?

See all THREE posts here by Pamela Weintraub (who is a LL journalist who recovered from lyme - and write about her entire family dealing with it in "Cure Unknown" book )
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Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=117755;p=0

RIFE Machine - Reference LINKS


http://flash.lymenet.org/ubb/ultimatebb.php/topic/2/13964

How to find an ILADS educated LL professional in complementary fields (naturopathic, acupuncture, etc.)

Also includes article and book links by all kinds of LL authors - and information about herbal and nutritional supplements.
-

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Brussels
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It's crazy how many alternatives we still have to explore....

It looks endless.

The problem, I think, is a matter of synchronicity of treatments.

What to do, in which order, in which amount, frequency, in order to move FORWARD, and not stay PUT?

What to combine - and what NOT to combine?

How to keep shifting treatments, and synchronize them again to move always forward,...

... cleaning layer by layer, starting by the most important ones?


For me, the only way to do that is using a lot of intuition, gut feeling...

... or getting help from ART, for example, that has a whole sequence of tests, that go by priority.

When the body tells: 'it's urgent, please treat this!', we follow.

Like Ariadne's thread in the labyrinth.

This is the only thing I go back to, when I'm lost. ART.

Or I go in deep meditation, and sometimes, some direction pops out in my head...

Posts: 6196 | From Brussels | Registered: Oct 2007  |  IP: Logged | Report this post to a Moderator
Brussels
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Overdoing is NEVER good, in my opinion, even though we all learn the bad way...

Some people have stronger detox organs than others, but I am definitively not one of them.


My lyme dr follows EVERYTHING dr K does. He says he never sees any hard-core reactions the way dr. K describes on his patients.

That is why he never apply ALL dr. K's ideas, only a few, and parallel, he gives supportive HOMEOPATHIC substances to the liver + gut + lymph + kidneys, as a starting point.

That's my lyme dr's method.

So you leave the office with 5, 6 different homeopathic substances to support your detox organs, ...

... plus the normal supplements or herbs (magnesium, probiotics, recommendations for liver flushes, colon cleanse, etc).

From there on, he does the 'killing' part, but never alone.

For him, the supportive part is what really will help healing the patient, not the killers ALONE.

Because of that, he never sees people collapsing from antimicrobial treatments.


I also went to dr. K's right hand in Germany (she used to be his right hand).

She uses mostly HIS ideas, with a bit of Bach flowers and other things, but I think she's the one who mostly apply his ideas to the letter here.

But I don't say she's better than my lyme doctor.


While I like some of her ideas for products, and I always learn, I prefer to treat basically with homeopathy, like the lyme doctor does.

Only homeopathy seems to truly support my body.
Either homeopathy or energy medicine (like Vital Force products)...


Even with homeopathy (or any energy medicine), one has to be careful, to study which dilution to take, to keep changing dilutions, to rotate products.

Homeopathy and herbs are WORLDS apart, and we don't take homeopathic substances the way we take supplements and herbs.


People think homeopathy is easy, any dilution is fine, or just keep taking them forever... in fact one can get wiped out with wrong dilutions (like too strong a dose, that is not necessarily curative).

Or the remedy will not be effective after a while, because wrong dilutions were taken...


I continue to support energy testing, following dr K's ideas.

From there on, we can test anything, using his products or not.

I don't know if you can find someone around you to help with tests. Someone that is not necessarily doing too aggressive treatments.

I wonder if bee venom is not like hyperbaric oxygen, or even rife: something you gotta do FOREVER (?)

I'd rather see it as a supportive treatment, and meanwhile, try to find a method to treat, like ART or something alike...

7 years is a long time.

It must be hard.... [Frown]

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sixgoofykids
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I did have good benefits from the KPU protocol. Now that I'm well, I am still sure to get those minerals so my body can continue to detox properly.

I'd start slow.

--------------------
sixgoofykids.blogspot.com

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Keebler
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While porphyria can inpair or totally disable the body's ability to process metabolic waste and "detox"

and some of the things that can help those with porphyria are certain nutrient supplements [as much as avoiding any Rx that is known to trigger porphyria] . . . .

To be clear, assessing or considering if porphyria might be an issue - well, just want to be sure that it is not seen as just another support measue. As addressing it is NOT supportive in the way we view other support adjunct issues.

If porphyria - in any of its eleven or more forms - is involved, it must take priority to understand and adequately address straight on. It can be managed yet at times may require emergency measures if it gets out of hand.


It can cause nerve damage - and it can also be fatal if not managed well. I think that many thousands of the Rx related deaths in hospital each year may have intertwined with the complications, at the root, undiagnosed porphyria.


With treatment of anything - anything - porphyria comes first in thought. Treatment for anything else and everything else MUST take into account porphyria.

It's not going to work to just try to tough out a treatment that can trigger porphyria - it can be fatal. This cannot be over stressed.

So, if a treatment for an infection, a condition (or whatever) has to be altered / adjusted with this in mind.
-

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
   

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