Porphyria

[Guest guest]

Hi ,

One other question regarding the porphyria...it says that a high carbohydrate diet is recommended. This is an issue I've wondered about for the past 2 years. I've noticed that any time I have a refined carb, my brain and vision feel clear for about 20 minutes to the point I feel almost normal. I know that refined carbs aren't healthy though and given I have SIBO I abstain 95% of the time as it's not worth the huge crash after the 20 minutes. I guess I'm just trying to figure this out because I know diet is huge in all this. My glucose level has been normal despite having hypoglycemic symptoms. I've always been petite (100 pounds) but ALWAYS ravenous no matter how much I eat (perhaps fom the parasites???). I can eat twice the amount what my 210 pound husband eats and not gain an ounce.

It almost feels as though whatever is in my head rushes to my stomach to feast on the carbs...if it is indeed parasites...or maybe it's just glucose getting to my brain and feeding it and giving me clarity?? I don't know...any thoughts on this? I'm thinking if I do a fast to clean my gut of the SIBO, my brain will no longer starve for nutrients...if that's what's going on with me.

Another thought is that my strict diet is too detoxing. Another member, Joanne, mentioned that once she brought grains back into the diet she felt better. I've been told I have a gluten sensitivity though with a blood test yet my biopsy contradicted it. I wish testing was more reliable!

Just curious about your thoughts on porphyria and diet.

Thanks!

-PH

> >> > Ok, my dear, "list-mates" (humm, do you already have a group name that> is pertaining to the "members" of the list? Like, Ex-Saliners? Or> Saline-Xers? Am thinking of a term that would depict a sense of> belongingness to the group. Anyway, do suggest if there's still none.)> lol...no, we don't have a collective name. Some women call> themselves Saline or Silicone Survivors.> > - but what would you call me, haha, I was actually looking for a> term that would signify me also as a member of the group, some sort of a> sense of belongingness. hmmm...maybe Truth Seekers???> > > > Anyway, back to the topic at hand, can anyone describe exactly what> you feel when you use the term "fogginess", help me figure out first the> exact description of what you feel. Maybe others are using the term> incorrectly, that way, we can all agree on the same symptom when we are> talking about it. This is difficult to convey. I've noticed in my> own experience it changes daily, minute to minute. Before implant,> I was in graduate school and had a quick, sharp mind with an IQ in the> very superior range (whatever that means!)...> > - you're too humble.. =) lol...maybe that did sound somewhat> arrogant...just trying to convey how easy comprehension was pre-implant> versus my current situation. I think that's what has been difficult for> many of us women...we look "normal", can carry on an intelligent> conversation for a brief moment, but no one knows how it feels in our> brains. I feel disabled, yet I know if I had to take a written exam of> some type, I could pass...sort of like a drunk feeling...you're aware of> what's going on but your brain doesn't respond as quickly.> > > my point being that my mind/brain was one of my greatest assets. > Looking back, there were a few times that after implantation I> "spaced out" briefly, sort of an ADD-like feeling, but I chalked it up> to a very busy life-style with so many things on my plate.Â> > - so maybe what you are saying is that you felt that "you were in> your own little world?" Locked in? Because that is usually how ADD> patients are described. Definitely. Honestly, I have wondered if I am> experiencing what many children on the autism spectrum feel because when> I was at my worst, I lost peripheral vision and had difficulty looking> people in the eye...and this is coming from a woman who was very social> and made it a point to look others in the eye. It was strange...my body> just wouldn't let me even though the desire was there. It is a trapped> feeling. I can tell through cleansing that I am "coming back into my> body/the world"...I know that sounds weird but when I was really ill, it> seemed nothing else in the world mattered...I no longer noticed> details...my focus was horrendous.> > > By the time the fatigue set in after having implants for 5 years,> confusion began (along with digestive issues and fatigue). Once I> made it to Dr. Kolb for explant, I was really scared as I was forgetting> to pick up my children, doing crazy things such as going out to the car> with the oven mitt still on, forgetting that I had made plans to do> something. At the same time I had splitting headaches and my vision> was deteriorating.Â> > - forgive me if during the cause of looking for answers I may be> acting like a devil's advocate, I will intentionally doubt some of the> symptoms that you will all tell me, the reason for that is for you to> dig deeper and to be sure of your exact symptoms. I hope you will> understand, but unlike the other doctors, my doubts are just to help you> make sure of your answers... while other doctors will doubt you just> because they believe in the saying "We destroy what we don't> understand." The big difference would be, I am here to stay. I> completely understand and I appreciate your willingness to dig deeper> and stick around. Too many of us have experienced doctors not knowing> the answers...which I empathize...they/we are only human...we don't know> the answers to everything. However, some docs, instead of admitting> they don't know, tend to turn it on the patient and offer an> antidepressant and/or infer it is all in our heads as a way to boost> their own self-esteem rather than confessing it's an unknown.> > > Dr. Kolb tested me with a melanocyte stimulating hormone (MSH) test.Â> I scored an 8, indicating neurotoxins. Anything above 35 is> considered normal. Â> > - okay, for all the readers of this list who still don't understand the> significance of this test, first of all, MELANOCYTE-STIMULATING> HORMONE is the following (take note of the three functions):> > 1. it is a hypothalamic neuroregulatory hormone> > 2. cytokine and mucus membrane regulatory hormoneÂ> > 3. regulatory hormone of almost all other hormones> > It is one of the hormones produced by the pituitary gland.Â> > So, then if MSH is a normal part of our body, why are we testing MSH if> we are in actuality wanting to get the level of biotoxin in our body?> It's like this, neurotoxins and biotoxins are a bit hard to quantify,> there are new tests that can show us the level in our body, but some of> these are still under experimentation, so, we make use of MSH test.> > How? Biotoxin Induced Diseases severely affect the pituitary gland and> the hypothalamus, and since MSH is a pituitary gland hormone, insulting> the pituitary gland with biotoxin will deplete the MSH in the body.> > MSH deficiency then is an indicator of biotoxin level.> > So, what are the effects of MSH levels? Well, I hope you took note of> the functions of MSH a while ago, hence, under production would lead to> the opposite of its functions which are:> > > 1. it is a hypothalamic neuroregulatory hormone which regulates> melatonin level (remember that melatonin is a sleep pattern> regulator)... and decreasing melatonin production causes a severe> sleep disorder. Once detoxification is started, MSH will again rise and> so will melatonin production and the patient now has a good night's> sleep.Â> > 2. MSH is a cytokine regulatory hormone, since cytokines are> involved with the immune system and since mucus production is one of the> defense mechanisms of the immune systems, there is mucus> overproduction. Because of this, we can see the affected patients with> symptoms of frequent cough and other mucous over-production. This is> interesting...whenever I have had a colonic, the colon hydrotherapist> mentions how she's surprised at the level of mucous. My sister has been> told the same thing and she is dealing with Grave's Disease. As well,> about a year after implantation I began having sinus problems. My> allergist said I was 90% blocked.> > 3. Since the pituitary gland is the "master gland", MSH is a per sea>  regulatory hormone of almost all other hormones. And having a low> MSH will wreak havok all throughout the body. Do you know how to raise> the MSH level...besides with sunlight or Vit D3? I briefly read long> ago that if MSH is low, the person doesn't stand a chance for regaining> health. I don't want to believe that!! Not all of us have been tested> for MSH, particularly the women who have already recovered. I would> think based on their symptoms that they had low MSH as well.> > > > > After explant, I was in very bad shape. I had to quit a job I> adored. I could no longer care for my children the way a mother> should. I had to remind myself how to wash my own hands and> iron...I used to work with autistic children and it reminded me of> having to break down the tasks into minute steps so they could> understand.. .I was much the same way at my worst. If I was> doing a task, I didn't have the ability to think about anything other> than that. I lost map skills and the ability to envision/dream.Â> For 10 months I was dizzy/drunk- like to the point I only left my house> to pick up my children from school and I'd pray the whole way that no> one would be harmed from my brain's incapacity to function properly.Â> > > - whoa> > > I should also mention that I lost vision in my left eye. It's hard> to describe but there were large portions of the day where the left side> of my brain felt cold, blank, empty...as if someone had shot a hole in> my brain. I had an MRI which was surpisingly normal and saw the top> optic neurologists in the city. They were confused...they knew> something wasn't right for a 37 year old to have glaucoma, but they had> no explanation other than there was "no way that it was from my> implants".Â> > - I guess they don't know the components of the silicone implants.> > > For the past two years I have detoxed and slowly the level of> confusion/brain fog has diminished. I am seeing a MD/ND who uses> meridian testing. My liver/gallbladder meridian tested poorly every> time. He said he wasn't surprised because vision problems are often> related to the liver/gallbladder. He put me on Ivermectin and> Alinia (for parasites which he says are related to most vision problems> in his experience). He then had me do a series of liver> flushes. I passed liver flukes and a tape worm. Â> > - Ok, Devil's Advocate time: Flukes and Tapeworm are parasites,> where did you get them? Are these documented by lab confirmations, were> they taenia solium (from pigs) or taenia saginata (cows)? My doc,> who is a MD/ND, said that we all have parasites in our body. His theory> is that when I swallowed a piece of amalgam filling, the parasites in my> gut fled to other parts of the body, creating an autoimmune> response/MS-like symptoms. I realize the dangers of mercury/amalgam> having worked with autistic children. I think most people could> probably handle swallowing a filling but someone whose immune system is> compromised from implants may not. Anyway, he said that I probably had> the tapeworm from childhood. It wasn't documented by lab confirmations> but there was no question about it when I passed it. The same with the> liver flukes...we all have them and for most of us they don't create> problems, but if the PH level of the body becomes too acidic, they can> overpopulate.> > He has had a great deal of success curing MS and other illnesses (i.e.> cancer, Parkinson's) by treating for parasites. He doesn't understand> why humans rush to treat our dogs, cats or horses for parasites but> think we are exempt from them.> > My vision returned within a couple months! However, I still> experience blurry vision. My head feels heavy and it's difficult to> turn my head...everything seems hard to coordinate.. .eyes,> brain...seems to be a central nervous thing.Â> > The brain fog I currently experience feels like an infection and it> seems to move around a great deal.  It literally feels as though> I'm walking through fog sometimes.  Sometimes it feels as though> it's in the brain stem but most of the time it feels as if it's in the> frontal lobe. Â> > - do you wear eyeglasses? When was the last time you had your vision> checked? Because we have what we call as a cluster headache, the most> common cause is error of eye refraction. I just want to know your> current visual status. I've seen probably 10 optometrists,> retinologists, optic neurologists, opthamologists, etc. Yes, I wear> glasses and contacts. There were various opinions...one said it was my> contacts, one said it was ischemic neuropathy, one said possible> toxicity, one said it was from my ceiling fan over my bed and the rest> just patted me on the knee. I believe it is parasites because it was> only when I was taking medication for them that my vision returned. My> vision then became worse again and so I went on another round of> medication and I could see again.> > My current vision is back to where it was pre-implant but it's blurry> from time to time and my eyes feel pressure...similar to the feeling> after crying...my eyes always feel that way now. My intraocular> pressure is 40, unless I am on Xalatan and then they are 17 (10-20 is> normal). I'd like to go off the Xalatan though and think I will be able> to with further detox. I wonder if the glaucoma is mercury-related. I> know many of the autistic kids I worked with had glaucoma. So far on> this forum, I've only encountered one woman with glaucoma. She said> hers went away after a year or two. Many women on here experience> visual disturbances, eye pain and eye fatigue.> > > Currently I don't feel completely debilitated as before. There was> a point in time that it felt as though I was watching a movie of my> life...as if I was detached in a strange, scary way. I also> experienced proprioception problems to where if I touched my head, it> didn't feel like part of my body...bizarre feeling. Currently,Â> I just feel slow which is still very frustrating. I have a lot of> memory loss. I used to be a "people person" who would never> forget a name or face. Now, if someone passes me, I don't always> remember what they looked like or if I spoke with someone I will forget> what we have shared where before I was known for my attention to> detail. I believe I will heal fully but it's been a slow, arduous> process.> > - Are you taking any Vitamin B complex? Could also partly be a> vitamin B deficiency. Yes, I take a liquid B Complex as well as> sublingual lozenges. I agree with you though...my symptoms do seem to> reflect a deficiency. I believe it's due to the gut problems. Six> months after implant, my gut began bloating after eating. I went to the> GI and was told I had IBS and that I'd have to live with it. I asked if> it could be related to the implants since prior to implant I had never> had any gut issues. I was told no...yet many women on here have> experienced the same digestive issues. I was diagnosed with small> intestinal bowel overgrowth (SIBO) and told I was fructose-intolerant. > I know I sound like a hypochondriac here with all these diagnoses at> such a young age. It still feels foreign to me that I'm in this> position as before implants, I was the picture of perfect health (hence> my user name because I want it back)! I had never been hospitalized> except for 2 c-sections and never had to go to a doc except for my> annual physical that always came out great.> > Regarding Vitamin B12, well, my comment on this would be, most B group> vitamins are usually given for nerve-related problems. We usually> prescribe, Vitamin-B complex to people with complaints of numbness, or> the like. I wake up frequently numb on my left side.> > - what is your sleeping position, do you sleep on your left side? If> you have a partner / husband that you share a bed with, have you tried> switching sides of the bed and noticing if the numbness shifts to the> right side? We're trying to cover all possibilities. Yes, I always> sleep on my left side. No, we haven't switched. I'll try> that...thanks.> > In patients who come to the hospital unconscious, usually from> alcohol intoxication or "alcohol coma", we just infuse and mix vitamin B> complex on the IV fluids and everything goes well.> > In my opinion, the most important among the B group is the Vitamin B1,> thiamine, you can read more about it at:> > http://en.wikipedia .org/wiki/ Thiamine> <http://en.wikipedia.org/wiki/Thiamine>  Thank you, I will look at> that.> >> > We usually advise our patients to take brown rice, instead of the> over-polished rice... brown sugar, instead of the bleached white> sugar. I have cut out all white foods, sugar, alcohol and> gluten. Many of my symptoms are synonomous with gluten sensitivity,> candida, mercury toxicity, leaky gut and hormonal imbalances.. .they> seem to be inter-related.> > - yes, making them very hard to distinguish from each other.Â> > SIDE-COMMENT: I remember a time during med school when my consultant has> a patient who had mercury poisoning symptoms, I was able to deduce all> the symptoms of mercury toxicity, the patient had silver-mercury> amalgams on 3/4 of his teeth, lived in a silver and ore mining area,> etc... but my consultant dismissed my case and decided to diagnose it> with a very common, easy to treat diagnosis. The patient didn't improve,> until the patient was lost to follow-up. That case is one of my> frustrations, some doctors do have close-minds, it's so frustrating. > You're right...it is frustrating. We need more docs like you!> > As a side note, my dad is a dentist and I spent many days after school> in his office. I've wondered if I was exposed to mercury vapors that> have accumulated over time. I was told my levels are moderate. I'm not> sure how to proceed. It seems that some who have recovered have done so> through chelation while others were able to do it with diet alone.> > > I remember a joke that goes like this: Patient calls his doctor, "Doc, I> think I have a cold.", then the doctor said, "Okay, go out of your house> and stay there for an hour.", then the patient said, "but doctor, it's> raining outside, I'll get pneumonia...", then the doctor said, "Good,> because I now how to treat pneumonia, but not a cold." Ha ha!!> > Lesson: Sometimes there are doctors who are so close-minded that they> would rather forcibly fit symptoms in a disease which they know how to> treat, rather than  actually treat the actual illness. What's worse> is, they'd deny you have any illness and say that you are> over-exaggerating or a hpochondriac. =( Soooo true. I can't tell you> how many times a doc has rolled his eyes or offered an antidepressant. > I don't see how an antidepressant would make my vision return so I> declined the offer. I do believe in the mind/body connection, but I> also think that much more is at play when a "healthy" 37 year old who> works out 3-5 times a week suddenly has gait problems, vision loss and> other classic MS symptoms.> > I was diagnosed with IBS and SIBO (small intestine bowel> overgrowth). My theory is that the heavy metals and chemical toxins> in implants are too much for some women (especially those with an APOE> 3/4 gene) and over time the body becomes congested and unable to excrete> all that is necessary. As a result bacterial, fungal and parasitic> overgrowth occurs leading to digestive problems, liver problems, chronic> fatigue, hormonal imbalances, etc. I'm sure more comes into play,> but this has been my experience. Â> > - thank you for sharing.> > > Not to generalize, but sometimes I wonder if all illness is really the> same thing: toxicity with resulting vitamin/mineral/ hormonal> deficiencies.Â> > - well, what is health? Health is a balance...  it's a yin-yang,> balance between all the vitamins... minerals... hormones needed by the> body. The infections we have, merely, disrupt this balance, hence> causing a "disease". Rowdy cells that go haywire, disrupt the balance,> producing cancers.> > > I see it as a very quiet and behaved class in a school, then all of a> sudden a bully comes along and disrupts the balance, as a result,> everyone in the class are affected and have a hard time with study. > Great analogy.> > It seems that in my quest for an answer I seem to come across heavy> metals/toxins playing a huge role in neurodegenerative disease. Dr.> Kolb said that women with mercury amalgam fillings tend to get sick from> implants, although there are also many on this forum who didn't have> amalgams. Regardless, I have learned that heavy metals are> implicated in many diseases.> - or that these are all separate entities which contribute to the> level of biotoxins... maybe someone with amalgams has a near toxic dose> of biotoxins already, then the implants just aggravates. Maybe others> who don't have amalgams have other contributing factors like unhealthy> diet. Again, it's a balance.> > > > Do read the link and please email me the symptoms that you experience> when you say fogginess... like when you experience that, are you able to> do or not do the following:> > - drive- write the alphabets forwards and backwards- recite the> alphabets forwards and> > backwards- count 20 to 1- recall and recite your SSS number- recall> details like what color of dress you wore the previous days of the week> In the beginning I had difficulty doing all of these. Just writing> a check was an enormous mental task. Now I am able to do all but> feel slow. If I could I'd sleep all day. I tend to shy away> from reading as it's difficult (eye tracking problems) and I used to be> an avid reader. One thing I notice frequently is that I transpose> letters when I type. I rarely/never used to do this. Dr. Kolb> said that women with salines tend to become ill with fungal infections.> > - again, they could have already a near toxic dose from the implants> and then the contributing factor was a fungal infection.> > > I had a blood test for candida but the result was normal. When I> went to the top infectious docs here they said it was impossible to have> a systemic fungal infection... that if I did, I'd have a 105 degree temp> and be bedridden... that they only see that in AIDS patients.Â> > - they are almost right. The symptoms that they are pertaining at is> what we call an "inflammatory response", but then again, these are just> seen if the infections reached the muscles or any area where the blood> reaches (remember that the blood carries the white blood cells, the> macrophages, etc... all the immune responses). We should take note that> there have been cases where someone gets bitten by a rabid dog and is> asymptomatic till years after. We should take note that blood has a hard> time reaching the spaces between fat cells, and this is where some> infections lie dormant, waiting for the right time for an infection. In> some cases, the infectious agent, if in your case, let's assume is> candida, might be lodged somewhere on the fat cells. Blood can't reach> them, no inflammation occurs, but the candida gets nourishment through> passive diffusion of nutrients via the intercellular spaces of fat> cells, then the candida or any infectious agent, can still excrete or> emit their toxic wastes and still cause a build-up of biotoxins, while> doing everything underthe radar so to speak since blood can't reach> them. What do you think? Yes, that makes sense, which is unfortunate> because then we have many sick people who have normal tests and are> consequently unable to get the proper treatment. Perhaps this is why> autism cannot be diagnosed through blood tests but through observation> of symptoms/behaviors. Yet, children are recovering by treating the> "probable" infections with diet and detox. The same holds true for us> women...most blood tests are normal yet we can barely function. When we> clean up our bodies through fasting, colonics, enemas, exercise and> diet, we regain our health.> > > I don't know what to believe because I have symptoms of candida yet zero> proof. What are your thoughts about candida?> > - see above. =)> > > > Also if it is accompanied by the following:> > - headache  - location (entire head, forehead only,> temporal, base of the skull, one side only  - is it> continuous, stops every 15mins, stops when you take meds, etcÂÂ>  - it is aggravated by sunlight, eye strain, noise, a certain> scent  - does it change its location or always on the same> area- nausea- flushes- fainting spells- difficulty in breathing- cramps-> hyperacidity Mine is mostly temporal and I think is associated with> adrenal fatigue. I experienced it 24/7 until I went on> progesterone. I still experience it occasionally. When first> ill, I had the feeling as though my head was going to explode as the> pressure was so intense. Dr. Kolb recommended craniosacral therapy> which brough relief for an hour or two. I have become more senstive> to sunlight and chemicals but it seems to have lessened in the last two> years as I cleanse my body. I can now wear makeup again and> actually feel better outside in the light as long as I have sunglasses.> > - SIDE-COMMENT: When I was a kid, when they'd ask me what I wanted> to be when I grew up, since I still didn't have a complete sense of> reality, I'd answer, VAMPIRE!> > Till, of course, years later, I got disappointed when I knew that> Vampires don't exist.> > But I later found a condition which mimicked vampire-traits. It could be> either genetic or acquired...ever heard of the condition called> PORPHYRIA? Please do read about it: Yes, I had heard about it but> didn't know much. I worked with an OT who suggested using a porphyrin> test for her autistic clients...I didn't think about it in my own case. > I do meet many of the criteria though.> > http://en.wikipedia.org/wiki/Porphyria> <http://en.wikipedia.org/wiki/Porphyria>> > > - The symptoms from porphyria remind me of the symptoms that most of you> have stated. Am just stating this as a consideration, I am not saying> anything final. I just noted the similarities of the symptoms. The> question could be, can one of the components of Silicone induce a> porphyria-like state / condition? I think so.> > > > Lets try to analyze all your symptoms one by one, so that we can find> the symptoms that are all present on all implantees. Then we can find> better ways of approaching the problem, and> > find a systematic way of getting a cure.> > I can guide all of you throughout your conditions and be there till we> find that you are all well, and that all of your experiences would just> be a thing of the past. I can't thank you enough for your willingness to> help us figure this out!  You are ahead of your game as most doctors> are reluctant to come forward or be open-minded to the reality of the> effects of implants on the body. Â> - You only stop learning when you think you already know everything...> and I know I don't. So as Rudyard Kipling stated, "My best teachers are> How, What, When, Where, and Why...". I am also learning a lot from all> of you, thank you also! =) Ditto...seems to be a mutually beneficial> relationship here. So glad you came on board. Also, thanks for sharing> Our Daily Muffin site...love it! ~PH> > > > - >

[Guest guest]

GG ~

I was like that for years and years until

my heart and other organs shut down 4

years ago..... I could eat circles around

anyone....and still weighed between

100-115 at the most.....

Now I am blown up like a toad frog.....

Dede**************We found the real ‘Hotel California’ and the ‘Seinfeld’ diner. What will you find? Explore WhereItsAt.com. (http://www.whereitsat.com/?ncid=emlwenew00000004)

[Guest guest]

hi ph;

i have the same problem re. weight and eating. you could have been describing me. i dont even know anyone else who has that kin d of weight problem, when eating lots, - always wondered why, - most people have the opposite problem. all of these overweight people couldnt all be free of parasites? what is pyorphia?

thanks.

gg

Re: PORPHYRIA

Hi ,

One other question regarding the porphyria...it says that a high carbohydrate diet is recommended. This is an issue I've wondered about for the past 2 years. I've noticed that any time I have a refined carb, my brain and vision feel clear for about 20 minutes to the point I feel almost normal. I know that refined carbs aren't healthy though and given I have SIBO I abstain 95% of the time as it's not worth the huge crash after the 20 minutes. I guess I'm just trying to figure this out because I know diet is huge in all this. My glucose level has been normal despite having hypoglycemic symptoms. I've always been petite (100 pounds) but ALWAYS ravenous no matter how much I eat (perhaps fom the parasites???). I can eat twice the amount what my 210 pound husband eats and not gain an ounce.

It almost feels as though whatever is in my head rushes to my stomach to feast on the carbs...if it is indeed parasites...or maybe it's just glucose getting to my brain and feeding it and giving me clarity?? I don't know...any thoughts on this? I'm thinking if I do a fast to clean my gut of the SIBO, my brain will no longer starve for nutrients...if that's what's going on with me.

Another thought is that my strict diet is too detoxing. Another member, Joanne, mentioned that once she brought grains back into the diet she felt better. I've been told I have a gluten sensitivity though with a blood test yet my biopsy contradicted it. I wish testing was more reliable!

Just curious about your thoughts on porphyria and diet.

Thanks!

-PH

> >> > Ok, my dear, "list-mates" (humm, do you already have a group name that> is pertaining to the "members" of the list? Like, Ex-Saliners? Or> Saline-Xers? Am thinking of a term that would depict a sense of> belongingness to the group. Anyway, do suggest if there's still none.)> lol...no, we don't have a collective name. Some women call> themselves Saline or Silicone Survivors.> > - but what would you call me, haha, I was actually looking for a> term that would signify me also as a member of the group, some sort of a> sense of belongingness. hmmm...maybe Truth Seekers???> > > > Anyway, back to the topic at hand, can anyone describe exactly what> you feel when you use the term "fogginess", help me figure out first the> exact description of what you feel. Maybe others are using the term> incorrectly, that way, we can all agree on the same symptom when we are> talking about it. This is difficult to convey. I've noticed in my> own experience it changes daily, minute to minute. Before implant,> I was in graduate school and had a quick, sharp mind with an IQ in the> very superior range (whatever that means!)...> > - you're too humble.. =) lol...maybe that did sound somewhat> arrogant...just trying to convey how easy comprehension was pre-implant> versus my current situation. I think that's what has been difficult for> many of us women...we look "normal", can carry on an intelligent> conversation for a brief moment, but no one knows how it feels in our> brains. I feel disabled, yet I know if I had to take a written exam of> some type, I could pass...sort of like a drunk feeling...you're aware of> what's going on but your brain doesn't respond as quickly.> > > my point being that my mind/brain was one of my greatest assets. > Looking back, there were a few times that after implantation I> "spaced out" briefly, sort of an ADD-like feeling, but I chalked it up> to a very busy life-style with so many things on my plate.Â> > - so maybe what you are saying is that you felt that "you were in> your own little world?" Locked in? Because that is usually how ADD> patients are described. Definitely. Honestly, I have wondered if I am> experiencing what many children on the autism spectrum feel because when> I was at my worst, I lost peripheral vision and had difficulty looking> people in the eye...and this is coming from a woman who was very social> and made it a point to look others in the eye. It was strange...my body> just wouldn't let me even though the desire was there. It is a trapped> feeling. I can tell through cleansing that I am "coming back into my> body/the world"...I know that sounds weird but when I was really ill, it> seemed nothing else in the world mattered...I no longer noticed> details...my focus was horrendous.> > > By the time the fatigue set in after having implants for 5 years,> confusion began (along with digestive issues and fatigue). Once I> made it to Dr. Kolb for explant, I was really scared as I was forgetting> to pick up my children, doing crazy things such as going out to the car> with the oven mitt still on, forgetting that I had made plans to do> something. At the same time I had splitting headaches and my vision> was deteriorating.Â> > - forgive me if during the cause of looking for answers I may be> acting like a devil's advocate, I will intentionally doubt some of the> symptoms that you will all tell me, the reason for that is for you to> dig deeper and to be sure of your exact symptoms. I hope you will> understand, but unlike the other doctors, my doubts are just to help you> make sure of your answers... while other doctors will doubt you just> because they believe in the saying "We destroy what we don't> understand." The big difference would be, I am here to stay. I> completely understand and I appreciate your willingness to dig deeper> and stick around. Too many of us have experienced doctors not knowing> the answers...which I empathize...they/we are only human...we don't know> the answers to everything. However, some docs, instead of admitting> they don't know, tend to turn it on the patient and offer an> antidepressant and/or infer it is all in our heads as a way to boost> their own self-esteem rather than confessing it's an unknown.> > > Dr. Kolb tested me with a melanocyte stimulating hormone (MSH) test.Â> I scored an 8, indicating neurotoxins. Anything above 35 is> considered normal. Â> > - okay, for all the readers of this list who still don't understand the> significance of this test, first of all, MELANOCYTE-STIMULATING> HORMONE is the following (take note of the three functions):> > 1. it is a hypothalamic neuroregulatory hormone> > 2. cytokine and mucus membrane regulatory hormoneÂ> > 3. regulatory hormone of almost all other hormones> > It is one of the hormones produced by the pituitary gland.Â> > So, then if MSH is a normal part of our body, why are we testing MSH if> we are in actuality wanting to get the level of biotoxin in our body?> It's like this, neurotoxins and biotoxins are a bit hard to quantify,> there are new tests that can show us the level in our body, but some of> these are still under experimentation, so, we make use of MSH test.> > How? Biotoxin Induced Diseases severely affect the pituitary gland and> the hypothalamus, and since MSH is a pituitary gland hormone, insulting> the pituitary gland with biotoxin will deplete the MSH in the body.> > MSH deficiency then is an indicator of biotoxin level.> > So, what are the effects of MSH levels? Well, I hope you took note of> the functions of MSH a while ago, hence, under production would lead to> the opposite of its functions which are:> > > 1. it is a hypothalamic neuroregulatory hormone which regulates> melatonin level (remember that melatonin is a sleep pattern> regulator)... and decreasing melatonin production causes a severe> sleep disorder. Once detoxification is started, MSH will again rise and> so will melatonin production and the patient now has a good night's> sleep.Â> > 2. MSH is a cytokine regulatory hormone, since cytokines are> involved with the immune system and since mucus production is one of the> defense mechanisms of the immune systems, there is mucus> overproduction. Because of this, we can see the affected patients with> symptoms of frequent cough and other mucous over-production. This is> interesting...whenever I have had a colonic, the colon hydrotherapist> mentions how she's surprised at the level of mucous. My sister has been> told the same thing and she is dealing with Grave's Disease. As well,> about a year after implantation I began having sinus problems. My> allergist said I was 90% blocked.> > 3. Since the pituitary gland is the "master gland", MSH is a per sea>  regulatory hormone of almost all other hormones. And having a low> MSH will wreak havok all throughout the body. Do you know how to raise> the MSH level...besides with sunlight or Vit D3? I briefly read long> ago that if MSH is low, the person doesn't stand a chance for regaining> health. I don't want to believe that!! Not all of us have been tested> for MSH, particularly the women who have already recovered. I would> think based on their symptoms that they had low MSH as well.> > > > > After explant, I was in very bad shape. I had to quit a job I> adored. I could no longer care for my children the way a mother> should. I had to remind myself how to wash my own hands and> iron...I used to work with autistic children and it reminded me of> having to break down the tasks into minute steps so they could> understand.. .I was much the same way at my worst. If I was> doing a task, I didn't have the ability to think about anything other> than that. I lost map skills and the ability to envision/dream.Â> For 10 months I was dizzy/drunk- like to the point I only left my house> to pick up my children from school and I'd pray the whole way that no> one would be harmed from my brain's incapacity to function properly.Â> > > - whoa> > > I should also mention that I lost vision in my left eye. It's hard> to describe but there were large portions of the day where the left side> of my brain felt cold, blank, empty...as if someone had shot a hole in> my brain. I had an MRI which was surpisingly normal and saw the top> optic neurologists in the city. They were confused...they knew> something wasn't right for a 37 year old to have glaucoma, but they had> no explanation other than there was "no way that it was from my> implants".Â> > - I guess they don't know the components of the silicone implants.> > > For the past two years I have detoxed and slowly the level of> confusion/brain fog has diminished. I am seeing a MD/ND who uses> meridian testing. My liver/gallbladder meridian tested poorly every> time. He said he wasn't surprised because vision problems are often> related to the liver/gallbladder. He put me on Ivermectin and> Alinia (for parasites which he says are related to most vision problems> in his experience). He then had me do a series of liver> flushes. I passed liver flukes and a tape worm. Â> > - Ok, Devil's Advocate time: Flukes and Tapeworm are parasites,> where did you get them? Are these documented by lab confirmations, were> they taenia solium (from pigs) or taenia saginata (cows)? My doc,> who is a MD/ND, said that we all have parasites in our body. His theory> is that when I swallowed a piece of amalgam filling, the parasites in my> gut fled to other parts of the body, creating an autoimmune> response/MS-like symptoms. I realize the dangers of mercury/amalgam> having worked with autistic children. I think most people could> probably handle swallowing a filling but someone whose immune system is> compromised from implants may not. Anyway, he said that I probably had> the tapeworm from childhood. It wasn't documented by lab confirmations> but there was no question about it when I passed it. The same with the> liver flukes...we all have them and for most of us they don't create> problems, but if the PH level of the body becomes too acidic, they can> overpopulate.> > He has had a great deal of success curing MS and other illnesses (i.e.> cancer, Parkinson's) by treating for parasites. He doesn't understand> why humans rush to treat our dogs, cats or horses for parasites but> think we are exempt from them.> > My vision returned within a couple months! However, I still> experience blurry vision. My head feels heavy and it's difficult to> turn my head...everything seems hard to coordinate.. .eyes,> brain...seems to be a central nervous thing.Â> > The brain fog I currently experience feels like an infection and it> seems to move around a great deal.  It literally feels as though> I'm walking through fog sometimes.  Sometimes it feels as though> it's in the brain stem but most of the time it feels as if it's in the> frontal lobe. Â> > - do you wear eyeglasses? When was the last time you had your vision> checked? Because we have what we call as a cluster headache, the most> common cause is error of eye refraction. I just want to know your> current visual status. I've seen probably 10 optometrists,> retinologists, optic neurologists, opthamologists, etc. Yes, I wear> glasses and contacts. There were various opinions...one said it was my> contacts, one said it was ischemic neuropathy, one said possible> toxicity, one said it was from my ceiling fan over my bed and the rest> just patted me on the knee. I believe it is parasites because it was> only when I was taking medication for them that my vision returned. My> vision then became worse again and so I went on another round of> medication and I could see again.> > My current vision is back to where it was pre-implant but it's blurry> from time to time and my eyes feel pressure...similar to the feeling> after crying...my eyes always feel that way now. My intraocular> pressure is 40, unless I am on Xalatan and then they are 17 (10-20 is> normal). I'd like to go off the Xalatan though and think I will be able> to with further detox. I wonder if the glaucoma is mercury-related. I> know many of the autistic kids I worked with had glaucoma. So far on> this forum, I've only encountered one woman with glaucoma. She said> hers went away after a year or two. Many women on here experience> visual disturbances, eye pain and eye fatigue.> > > Currently I don't feel completely debilitated as before. There was> a point in time that it felt as though I was watching a movie of my> life...as if I was detached in a strange, scary way. I also> experienced proprioception problems to where if I touched my head, it> didn't feel like part of my body...bizarre feeling. Currently,Â> I just feel slow which is still very frustrating. I have a lot of> memory loss. I used to be a "people person" who would never> forget a name or face. Now, if someone passes me, I don't always> remember what they looked like or if I spoke with someone I will forget> what we have shared where before I was known for my attention to> detail. I believe I will heal fully but it's been a slow, arduous> process.> > - Are you taking any Vitamin B complex? Could also partly be a> vitamin B deficiency. Yes, I take a liquid B Complex as well as> sublingual lozenges. I agree with you though...my symptoms do seem to> reflect a deficiency. I believe it's due to the gut problems. Six> months after implant, my gut began bloating after eating. I went to the> GI and was told I had IBS and that I'd have to live with it. I asked if> it could be related to the implants since prior to implant I had never> had any gut issues. I was told no...yet many women on here have> experienced the same digestive issues. I was diagnosed with small> intestinal bowel overgrowth (SIBO) and told I was fructose-intolerant. > I know I sound like a hypochondriac here with all these diagnoses at> such a young age. It still feels foreign to me that I'm in this> position as before implants, I was the picture of perfect health (hence> my user name because I want it back)! I had never been hospitalized> except for 2 c-sections and never had to go to a doc except for my> annual physical that always came out great.> > Regarding Vitamin B12, well, my comment on this would be, most B group> vitamins are usually given for nerve-related problems. We usually> prescribe, Vitamin-B complex to people with complaints of numbness, or> the like. I wake up frequently numb on my left side.> > - what is your sleeping position, do you sleep on your left side? If> you have a partner / husband that you share a bed with, have you tried> switching sides of the bed and noticing if the numbness shifts to the> right side? We're trying to cover all possibilities. Yes, I always> sleep on my left side. No, we haven't switched. I'll try> that...thanks.> > In patients who come to the hospital unconscious, usually from> alcohol intoxication or "alcohol coma", we just infuse and mix vitamin B> complex on the IV fluids and everything goes well.> > In my opinion, the most important among the B group is the Vitamin B1,> thiamine, you can read more about it at:> > http://en.wikipedia .org/wiki/ Thiamine> <http://en.wikipedia.org/wiki/Thiamine>  Thank you, I will look at> that.> >> > We usually advise our patients to take brown rice, instead of the> over-polished rice... brown sugar, instead of the bleached white> sugar. I have cut out all white foods, sugar, alcohol and> gluten. Many of my symptoms are synonomous with gluten sensitivity,> candida, mercury toxicity, leaky gut and hormonal imbalances.. .they> seem to be inter-related.> > - yes, making them very hard to distinguish from each other.Â> > SIDE-COMMENT: I remember a time during med school when my consultant has> a patient who had mercury poisoning symptoms, I was able to deduce all> the symptoms of mercury toxicity, the patient had silver-mercury> amalgams on 3/4 of his teeth, lived in a silver and ore mining area,> etc... but my consultant dismissed my case and decided to diagnose it> with a very common, easy to treat diagnosis. The patient didn't improve,> until the patient was lost to follow-up. That case is one of my> frustrations, some doctors do have close-minds, it's so frustrating. > You're right...it is frustrating. We need more docs like you!> > As a side note, my dad is a dentist and I spent many days after school> in his office. I've wondered if I was exposed to mercury vapors that> have accumulated over time. I was told my levels are moderate. I'm not> sure how to proceed. It seems that some who have recovered have done so> through chelation while others were able to do it with diet alone.> > > I remember a joke that goes like this: Patient calls his doctor, "Doc, I> think I have a cold.", then the doctor said, "Okay, go out of your house> and stay there for an hour.", then the patient said, "but doctor, it's> raining outside, I'll get pneumonia...", then the doctor said, "Good,> because I now how to treat pneumonia, but not a cold." Ha ha!!> > Lesson: Sometimes there are doctors who are so close-minded that they> would rather forcibly fit symptoms in a disease which they know how to> treat, rather than  actually treat the actual illness. What's worse> is, they'd deny you have any illness and say that you are> over-exaggerating or a hpochondriac. =( Soooo true. I can't tell you> how many times a doc has rolled his eyes or offered an antidepressant. > I don't see how an antidepressant would make my vision return so I> declined the offer. I do believe in the mind/body connection, but I> also think that much more is at play when a "healthy" 37 year old who> works out 3-5 times a week suddenly has gait problems, vision loss and> other classic MS symptoms.> > I was diagnosed with IBS and SIBO (small intestine bowel> overgrowth). My theory is that the heavy metals and chemical toxins> in implants are too much for some women (especially those with an APOE> 3/4 gene) and over time the body becomes congested and unable to excrete> all that is necessary. As a result bacterial, fungal and parasitic> overgrowth occurs leading to digestive problems, liver problems, chronic> fatigue, hormonal imbalances, etc. I'm sure more comes into play,> but this has been my experience. Â> > - thank you for sharing.> > > Not to generalize, but sometimes I wonder if all illness is really the> same thing: toxicity with resulting vitamin/mineral/ hormonal> deficiencies.Â> > - well, what is health? Health is a balance...  it's a yin-yang,> balance between all the vitamins... minerals... hormones needed by the> body. The infections we have, merely, disrupt this balance, hence> causing a "disease". Rowdy cells that go haywire, disrupt the balance,> producing cancers.> > > I see it as a very quiet and behaved class in a school, then all of a> sudden a bully comes along and disrupts the balance, as a result,> everyone in the class are affected and have a hard time with study. > Great analogy.> > It seems that in my quest for an answer I seem to come across heavy> metals/toxins playing a huge role in neurodegenerative disease. Dr.> Kolb said that women with mercury amalgam fillings tend to get sick from> implants, although there are also many on this forum who didn't have> amalgams. Regardless, I have learned that heavy metals are> implicated in many diseases.> - or that these are all separate entities which contribute to the> level of biotoxins... maybe someone with amalgams has a near toxic dose> of biotoxins already, then the implants just aggravates. Maybe others> who don't have amalgams have other contributing factors like unhealthy> diet. Again, it's a balance.> > > > Do read the link and please email me the symptoms that you experience> when you say fogginess... like when you experience that, are you able to> do or not do the following:> > - drive- write the alphabets forwards and backwards- recite the> alphabets forwards and> > backwards- count 20 to 1- recall and recite your SSS number- recall> details like what color of dress you wore the previous days of the week> In the beginning I had difficulty doing all of these. Just writing> a check was an enormous mental task. Now I am able to do all but> feel slow. If I could I'd sleep all day. I tend to shy away> from reading as it's difficult (eye tracking problems) and I used to be> an avid reader. One thing I notice frequently is that I transpose> letters when I type. I rarely/never used to do this. Dr. Kolb> said that women with salines tend to become ill with fungal infections.> > - again, they could have already a near toxic dose from the implants> and then the contributing factor was a fungal infection.> > > I had a blood test for candida but the result was normal. When I> went to the top infectious docs here they said it was impossible to have> a systemic fungal infection... that if I did, I'd have a 105 degree temp> and be bedridden... that they only see that in AIDS patients.Â> > - they are almost right. The symptoms that they are pertaining at is> what we call an "inflammatory response", but then again, these are just> seen if the infections reached the muscles or any area where the blood> reaches (remember that the blood carries the white blood cells, the> macrophages, etc... all the immune responses). We should take note that> there have been cases where someone gets bitten by a rabid dog and is> asymptomatic till years after. We should take note that blood has a hard> time reaching the spaces between fat cells, and this is where some> infections lie dormant, waiting for the right time for an infection. In> some cases, the infectious agent, if in your case, let's assume is> candida, might be lodged somewhere on the fat cells. Blood can't reach> them, no inflammation occurs, but the candida gets nourishment through> passive diffusion of nutrients via the intercellular spaces of fat> cells, then the candida or any infectious agent, can still excrete or> emit their toxic wastes and still cause a build-up of biotoxins, while> doing everything underthe radar so to speak since blood can't reach> them. What do you think? Yes, that makes sense, which is unfortunate> because then we have many sick people who have normal tests and are> consequently unable to get the proper treatment. Perhaps this is why> autism cannot be diagnosed through blood tests but through observation> of symptoms/behaviors. Yet, children are recovering by treating the> "probable" infections with diet and detox. The same holds true for us> women...most blood tests are normal yet we can barely function. When we> clean up our bodies through fasting, colonics, enemas, exercise and> diet, we regain our health.> > > I don't know what to believe because I have symptoms of candida yet zero> proof. What are your thoughts about candida?> > - see above. =)> > > > Also if it is accompanied by the following:> > - headache  - location (entire head, forehead only,> temporal, base of the skull, one side only  - is it> continuous, stops every 15mins, stops when you take meds, etcÂÂ>  - it is aggravated by sunlight, eye strain, noise, a certain> scent  - does it change its location or always on the same> area- nausea- flushes- fainting spells- difficulty in breathing- cramps-> hyperacidity Mine is mostly temporal and I think is associated with> adrenal fatigue. I experienced it 24/7 until I went on> progesterone. I still experience it occasionally. When first> ill, I had the feeling as though my head was going to explode as the> pressure was so intense. Dr. Kolb recommended craniosacral therapy> which brough relief for an hour or two. I have become more senstive> to sunlight and chemicals but it seems to have lessened in the last two> years as I cleanse my body. I can now wear makeup again and> actually feel better outside in the light as long as I have sunglasses.> > - SIDE-COMMENT: When I was a kid, when they'd ask me what I wanted> to be when I grew up, since I still didn't have a complete sense of> reality, I'd answer, VAMPIRE!> > Till, of course, years later, I got disappointed when I knew that> Vampires don't exist.> > But I later found a condition which mimicked vampire-traits. It could be> either genetic or acquired...ever heard of the condition called> PORPHYRIA? Please do read about it: Yes, I had heard about it but> didn't know much. I worked with an OT who suggested using a porphyrin> test for her autistic clients...I didn't think about it in my own case. > I do meet many of the criteria though.> > http://en.wikipedia.org/wiki/Porphyria> <http://en.wikipedia.org/wiki/Porphyria>> > > - The symptoms from porphyria remind me of the symptoms that most of you> have stated. Am just stating this as a consideration, I am not saying> anything final. I just noted the similarities of the symptoms. The> question could be, can one of the components of Silicone induce a> porphyria-like state / condition? I think so.> > > > Lets try to analyze all your symptoms one by one, so that we can find> the symptoms that are all present on all implantees. Then we can find> better ways of approaching the problem, and> > find a systematic way of getting a cure.> > I can guide all of you throughout your conditions and be there till we> find that you are all well, and that all of your experiences would just> be a thing of the past. I can't thank you enough for your willingness to> help us figure this out!  You are ahead of your game as most doctors> are reluctant to come forward or be open-minded to the reality of the> effects of implants on the body. Â> - You only stop learning when you think you already know everything...> and I know I don't. So as Rudyard Kipling stated, "My best teachers are> How, What, When, Where, and Why...". I am also learning a lot from all> of you, thank you also! =) Ditto...seems to be a mutually beneficial> relationship here. So glad you came on board. Also, thanks for sharing> Our Daily Muffin site...love it! ~PH> > > > - >

[Guest guest]

Hi Gayle,

We ALL have parasites. They nest in our organs, tissues, blood, everywhere and for most people, they don't bother us. It's when we have an overload of toxins that the parasites overgrow because the toxins make our blood acidic which depletes oxygen and creates a perfect environment for parasites and fungi.

Yes, overweight people can have parasite infections too. I think for me, the parasites were eating my nutrients and I therefore wasn't gaining weight. One can still have parasites though and be heavy...parasitic infections can affect our hormones which effects our metabolism in various ways, either causing us to gain or lose.

My doc believes that almost everyone with chronic illness is suffering from a parasitic overgrowth and one of the first things he recommends is medication and cleansings followed by liver flushes.

Everything that this forum recommends will help in getting them under control...diet, drinking lots of water, Wormwood complex from Mediherb Standard Process, FIR sauna, coffee enemas, colonics, parasite cleanses, liver flushes, etc.

You asked about porphyria...http://en.wikipedia.org/wiki/Porphyria

I wouldn't worry about that as a diagnosis though. I have some of the symptoms but I believe they will clear with proper nutrition, enzyme supplementation and detox.

~PH

[Guest guest]

i was told by friend that she thinks I have this. I was having frequent attacks

last year, and after reading about chemically induced cases, they even mentioned

breast implants, I am even more convinced I had or may have this now, as I had

an attack last week, after going a while without one. I read the triggers, and

they exactly fit what was happening to me. I was taking a bunch of meds,

dieting with no carbs allowed, and had every symptom listed. I tried to explain

this to many doctors who said it was fibro attacks, but have never had anyone

with fibro have one of these. The ones I had were severe, I thought I was

going crazy, but think I might still have this. I tried to explain that it was

some sort of metabolic problem because I had trouble walking talking confused

pain, all of what they list. I can't believe that fibro could cause such

attacks. I kept reading, they mention that it can be drug induced too, and they

had me on a cocktail of drugs. I never went to dr during an attack because when

I get them, I can't walk well or talk and figured they would say it was anxiety.

I even remember asking the board about these, but I don't remeber anyone having

these. Maybe someone now has heard of this? Nannette