Friday, June 6, 2008

Welcome to the Family Blog for Jenny.

Jenny is a 14 year-old girl who lives in Northern California.

Over the last year, she has gone from being a fully healthy 13 year-old to being nearly completely paralyzed. She retains movement only in her neck and mouth and faintly in her left hand.This rapid decline in motor ability has understandably shocked and concerned us [her family]. We have responded by working with the best doctors in the field, fighting continuously to reach a diagnosis and find treatments.

Despite the best efforts of an extremely talented array of medical professionals, we have not been able to stop her decline. Doctors don't know for sure why Jenny got so sick but some think it may be connected to the Gardasil vaccinations she got (last one in March, 2007) and the weakening that seemed to start in spring and gradually built up. One sign was in April 2007 when everyone in her PE class laughed at her because she couldn't jump a hurdle they considered really puny. It is hard to say when the weakening started but by summer she had a terrible limp.

One of the major things that would help her doctors figure out what to do is to find other people like Jenny (called "comparables")--people that share her medical condition and perhaps have had luck with certain treatments.

We are creating this blog to aid us in our search for comparables. If you think you may know a comparable, we urge you to check out the comparable traits in the sidebar and email us at jenjensfamily@gmail.com. Even if you do not know a comparable, feel free to leave a comment of support or link to any information you think might be helpful for us.

Thank you so much.

Jenny Then

Jenny crouches near a statue about a year ago

Jenny Now

Jenny propped up in bed using remaining finger movement to control mouse. The facial swelling is due to steroids





65 comments:

eponine119 said...

I'm so sorry you're all going through this.

Has Guillain-Barre syndrome been considered? It can result in paralysis and I believe can be triggered by vaccinations like the flu shot, since the HPV vax seems to have been a trigger point.

wishkey said...

I don't know much about this, but it sounds a bit like the child in Lorenzo's Oil, and that was based on a true story.

I posted your story/link in my LJ, and asked people to look and pass it on. good luck, and I hope jenny gets well. Good thoughts!

Maurilio said...

I am wondering whether it would be possible to contact the people who have received the Gardasil vaccine and have had their symptoms documented.
There are some class actions lawsuits ongoing so perhaps getting a list of people involved may be a good path to follow.

cj1951 said...

I am so sorry that you are going through this. I did an article using just the symptoms associated with the Gardasil vaccine. I ended up with heavy metal poisoning. Some girls have had their hair tested and the results were that the hair had a heavy concentration of aluminum, mercury and nickel. All of which are neurotoxins. Some of the girls that have had severe reactions to the vaccine have started a detox program and that is being successful.

Last week I read that L-Histidine can trigger the body in a way that it does not process heavy metals from the body. Because of this the body retains the heavy metals and that causes symptoms similar to poisoning. Unfortunately, the heavy metals lodge themselves in the organs of the body and from what I have read are not predominate in the blood stream. That is probably why doctors do not catch it.

You and your family will be in my prayers.

Avendya said...

This may have already been eliminated, but has she been tested for Lyme disease?

I have chronic Lyme, and had much the same symptoms as Jenny. I went from an energetic child to barely being able to stand up within about a year. Loss of muscle control or paralysis is an extreme symptom, but not unheard of. If possible, have her tested by IGenex - they specialize in tick-borne illnesses. (You also might want to check for coinfections - for instance, I have babesia, probably from the same tick bite.)

(You may get the same reaction I did from a doctor when I gave them a positive test for Lyme - that it didn't exist in my state (despite extensive traveling to states where it's more common), and it was just a false positive, or that there is no such thing as chronic Lyme. All I can really say to that is that by the time I found a doctor who treated Lyme, I couldn't walk more than a few steps, couldn't concentrate long enough to read a sentence, slept the vast majority of the time, and couldn't attend school. I've been on IV antibotics for nearly three years, but I'm back in school, full-time, decent grades, back to reading for fun, and I can walk without pain. From your comparable list, I only have a and e, but well - in my opinion, it's worth having the test done, if only to rule it out.)

Like Jenny, I went to a number of doctors and couldn't figure out what was wrong, and I was getting progressively sicker every day. I know what you're going through, and I wish you the best of luck finding out the cause - my thoughts are with both you and Jenny.

Feel free to email me if you want more information about Lyme, or just want to talk to someone who's been through something similar.

I'll pass this along to readers of my Livejournal as well.

Lokesh said...

I'm sorry that I can't be of much direct help. However, I will keep you and your family in our prayers and wish for a speedy recovery.

The Kalra Family.

sweethrt28k said...

I'm sorry I don't really know of anyone that has something similar and I know this seems trivial but have you tried vitamins? This company called Shaklee has helped people with various conditions so its worth a shot...I'll look into if there has been any cases similar to yours that people have tried Shaklee.
I have said a prayer for your family and Jenny and will continue to do so. God Bless and I will "report back" if I find anything that may help!

Sonu said...

All the best to you Jenny and your family. You will be in our prayers...

tv-elf said...

Can't help much with diagnosis, but I have grown up in Northern CA with spinal muscular atrophy. If y'all need to ask any question on day-to-day things, you can reach me through my blog.

Elias Eliadis said...
This comment has been removed by the author.
DD said...

Wikipedia has some stories that may link you to similar people who were sick.

http://en.wikipedia.org/wiki/Gardasil

particularly a story about some girls in Sydney.

You'll be better soon.

em-h said...

I don't know if this is useful, but my brother-in-law had very similar symptoms, and was eventually diagnosed with cerebral vasculitis that was very hard to detect because it was only affecting the capillaries in the brain. It was identified through a biopsy ultimately. To this day we don't know what caused it, though the assumption is that a virus, possibly mild, somehow crossed the blood-brain barrier. Treatment (I'd need to inquire with the family about what the exact treatment was) was eventually able to arrest but not reverse the symptoms.

Of course there are a lot of differences (e.g. he was a middle-aged man), and it may not be the same thing at all, but any avenues of exploration might be worthwhile ... if you want any more information on this, you can write to me at maggie AT web DOT net.

I do hope she gets much better soon, whatever the illness is!

Liz said...
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Liz said...
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Liz said...

Hmm, I can't make my links work right! Sorry!

Though I don't know how to answer your medical question, I'd like to say hi to Jenny and wish her luck.

I am a wheelchair user (though not paralyzed) and have found it very helpful to connect with other people with disabilities online. It is really helpful to talk with people who are living with some of the same issues.

Jenny might like some of these online communities:

GimpGirl, which has forums, a LiveJournal community, meetings in Second Life and on IRC, and is women-only, for women with disabilities. There are other teenagers who come to the online meetings to chat, ask questions about college, independent living, and that sort of thing.

http://www.gimpgirl.com/
http://community.livejournal.com/gimpgirl/

Ouch is the BBC's excellent group blog, by and for people with disabilities,

http://www.bbc.co.uk/ouch/

There are magazines like New Mobility and for kids, Kids on Wheels (though that is too young a magazine for a 14 year old)

http://www.newmobility.com/
http://www.kidsonwheels.cc/

The very best of luck to you in getting a diagnosis and cure. But, in the meantime, it is really good to have positive connections and images and to see how people do live their lives.


- Liz Henry
http://liz-henry.blogspot.com

writerrising said...

I found this blog through a link somebody posted.

Has any doctor done an MRI to look for a chiari malformation?

You mentioned that there was autism and seizures in one member of the family. I know someone who was diagnosed with autism when it was actually symptoms of something else and has a chiari malformation that is causing seizures.

I don't know all her symptoms so I'm not really making an educated guess here, I just know that chiari malfunctions can cause pain and paralysis and are very rare so sometimes doctors don't look for them.

I truly hope you find a healing answer.

ragged-edges said...

This sounds similar to what my friend had: Transverse Myelitis.

It took the doctors over 3 months to determine that's what it was so it wouldn't hurt to suggest it to them.

ashkierasghost said...

I am very sorry that you are going through this.

There is a book that I would suggest that you and your family read. It is called "Let's Get Well." By Adelle Davis. It is no longer in print. But is available used. This book covers how to provide the body with all the nutrients it needs to encourage healing. She has a formula that she suggests be taken every few hours to provide non-stop nutrition. With the hope that if more nutrition than the body normally needs is provided that the body may be able to stop the progression of disease. And perhaps even heal. I know the title sounds corny. But it is one of the best books on attacking disease through nutrition that I have found.

Also. The new research is finding that Zinc is exceptionally important to both the health of nerves and the health of the immune system. Some of the new research is phenomenal. They had no idea that zinc is so important to nerve health.

Also I spoke with a medical doctor researching nutritional approaches to disease. This was a practicing MD -- not a new age quack. And he said what he would recommend for heavy metal toxicity is MSM. Large doses. Several tablets a day (5-10 of the 1000mg tablet)or 2 teaspoons of the powder mixed in water or tea in divided doses.

Also from personal experience I have found that I cannot adequately absorb B-complex vitamins from a combined pill. I have to buy the vitamins separately and take them separately. I have never heard of this being a problem with anyone else. But it could be worth a try. I leave about an hour between tablets. It is annoying. But it seems to aid in absorbing the vitamin. And -- as I am sure you already know -- B vitamins are critical to nerve health. B6 and Niacin especially. A deficiency in B6 can cause nerve damage.

One added bit of information. I was told by a micro-biologist working in HIV research at the University of Washington (Florey -- since retired) that the B vitamin Thiamine needs to be taken as Thiamine Hydochloride. The common form found in most multivitamins is not absorpable by the human body. Check the back of the bottle and it will tell you if it is Hydochloride (also written HCL) or not.

I don't know if any of this is helpful -- or just annoying. But I wish you the very best.

tolu said...

I think a possible option is Gullen Barre syndrome. I have lupus and had a friend who was inaccurately diagnosed with lupus and given steroid. With Gullen barre i think Steroids might actually make it worse. I am sorry to hear this news. Also thus far the use of vitamins and oils have helped me, she might be deficient in something also. Please continue to hold on.

Kelly said...

Hi - I'm sure you've already ruled this out, but I have a good friend whose 5 year old little girl had a booster shot in January and by April, she couldn't walk. It wasn't Gardasil - not sure what it was. Anyway, they've diagnosed her with Juvenile Dermatomyositis, which involves a skin rash and then huge autoimmune issues. There's lots of info on the web. It sounds like you've probably moved way past that diagnosis, but I thought it was worth a shot! Best wishes and strength to Jenny and her family.

azzy23 said...

Wishkey:

Adrenoleukodystrophy is primarily seen in young boys, with females as carriers. There are rare variations, and expressions of the disease in females though, and the progression of the disease is much slower and (from what I've read) physically painful. I recently read that a pre-natal test has now been developed, but the excess of VLCFA in the system would be an indicator, and a healthy mother could have herself tested for that.

vmh said...

My thoughts are with your family. We found a lot of information at NORD, National Organization For Rare Diseases. http://www.rarediseases.org/ Since there are so many diseases that begin at puberty, they might be of some help. Contact them. They are a fabulous organization and are willing to help. I hope you find the answers you need.

Michelle said...

Dear Jenny and family,
I can only imagine. Has anyone ever mentioned Mitochondrial Disease? A vaccine reaction can trigger any number of mito diseases if it is lying dormant in the system. You may want to research this and join the online mito@yahoogroups.com It is difficult diagnosing and many test are needed for an accurate dx. I hope that this helps. You and your family are in our prayers....Michelle & family (P.A.) wwww.babyhomepages.net/thegillespiefamily/

annemariegreenberg said...

Please check out www.coresynch.com
and research teachers at the New Mexico School of Natural Therapeutics.

Natural Healing is possible!

Marco Polo said...

We hope that a breakthrough will happen soon that will help Jenny to start recovering. She is a lovely girl and it is sad to see her suffering so.

Unfortunately, neither me nor my son know any comparables. You all are in our thoughts.

Warmest wishes,

Jacob & Boaz

MustangC said...

Hi,
I am so sorry that you have to suffer with medical problems and not answers. Have you tried neuroresearch? Harry Chugani,M.D. Chief of PediNeurology at Detroit Medical Center Children's Hospital helped my son, suffered from getting stuck in movements r/t severe PANDAS/strep of brain. Might be worth a phone call/consult.
Hope for your healing soon,
Carole/Detroit

toremember said...

I do a lot of health research for myself and a little blog I have and a website called naturalnews.com.. not much, but I saw the Facebook group and I couldn't stop myself from writing.

Pau d arco is an herb that has been proven to help with hpv. I have psoriasis, and I received an abnormal pap which could have been hpv, and I read that pau d arco can help hpv (along with mrsa - proven in 2003), and by the time I got the coloscopy, it was gone. My psoriasis is also nearly gone.

Spirulina and Chlorella supposedly can remove heavy metals and rebuild nerve tissue. This is an ebook about Chlorella and Spirulina: http://www.chlorellafactor.com/

I add these foods to juice every morning, and I've lost track of how much improvement I've seen..

Bentonite clay is supposed to also remove metals from the body, by ingestion or baths..

All of these supplements also taut removing parasites. I discovered about 2 years ago (age of 23) that I was filled with worms. These have helped, and a cleanse at drnatura.com also helped. It blew my mind. I've seen probably 30-50 worms since I started trying to get rid of them, and I cannot keep track of all the differences it's made. I imagine they can lead to all types of problems.

My hope goes out to your beautiful daughter.
Best,
Stephanie

RollerCoasterMom said...

This has probably already been considered, but could it be Juvenile Dermatomyositis? My 6 year old son was diagnosed about three weeks ago. In mid February, just a few months ago, he was a physically a normal chid - climbing, throwing balls, etc. Now, he can't go up/down stairs, get up from a chair, etc. Last week he started on IV steroids, and we are seeng some improvement. We are optimistic.

Again, Jenny and her family probably have already looked into this, but just in case ...

Laura1 said...

Have the Drs considered: botulism, myasthenia, poliomyelitis, toxic neuropathy, or abnormal porphyrin metabolism. It sounds like they already did what the could, thinking it was Guillan-Barre syndrome. Good luck in the search for a diagnosis.

RollerCoasterMom said...

Sorry - I also meant to mention that with Juvenile Dermatomyositis, typically there is a rash - however, my son never had the rash. Because there was no rash, it took much, much longer to get a diagnosis.

Tricia said...

My heart aches for your family...I am putting your blog information in my own blog in hopes of finding someone that can help.

My thoughts and prayers are with you,

Tricia
www.blessedwithautism.blogspot.com

natasa said...

so sorry about what is happening, hope you find answers soon.

has any of the doctors suggested high doses of subcutaneous methylcobalamin/mb12 - it is being used by some people with ALS(Lou Gehring), and is often halting progress where nothing else has worked. there are references on pubmed or try to find out more from ALS yahoo list

Kyle said...

HBOT (hyperbaric oxygen treatment) has been used with some success in several neuroinflammatory disorders (including autism - helped my son) with some success. It's not mention if you tried it but it could be helpful. The International Hyperbaric Association site can direct them to more info and places that do it.
Kyle (DAN doc)

Our Hectic life with five kids, including triplets said...

I am a mom of Kai, who is in Windrush. Clarence gave me the link to Jenny's page.

I am so sorry for your family for having to go through this. This unknown must be so scary and frustrating at the same time. Our family truly hope that you can find a cure for her.

Though with a different disease, our family have gone through rough time for the last 4 years, with Kai's diagnosis with leukemia. He had recurrence once too. It is always hard when your own child is sick.

We will be thinking of Jennie, and will come to this site if I see or find anyone whose condition is similar to her.

Mika
Kai's site
http://www.caringbridge.org/ca/kaiwatanabe

Angelique said...

I am so very hopeful that you will find answers that lead to wellness.

My daughter (5) has left side weakness and motor coordination and speech issues following her last vaccines a year ago (DTAP, VAR). We have just got back test results, high aluminum in her bloodstream, and positive for HHV-6 virus. We are starting DAN! protocols for nutrition and chelation (DMPS suppositories, from Coastal Compounding Pharmacy) as well as antivirals for the HHV-6. (My son had been DX Autistic 4 years ago, but is no longer on the spectrum after chelation which pulled mercury and aluminum at high levels.) You can find a DAN doctor in your area via links through Autism Research Institute website, www.autism.com.

Also, lab in France for testing urinary porphyrins to determine body burden of heavy metals, website www.labbio.net.

We also have a friend who has ALS; he regularly gets treatment at Forbes-Norris which is up in the Bay area; perhaps they might have some further ideas as to how to slow progression.
www.cpmc.org/services/als/

There's been research that links HHV-6 to MS, which you can find on-line, and there's been research linking aluminum hydroxide vaccine adjuvant to motor neuron death and Gulf War syndrome (Shaw et al, in the journal Neuromolecular Medicine Sept. 2007).

Someone at website Age of Autism posted in comments on this article a list of VAERS reported incidents of Bell's Palsy following HPV vax.

I hope the above info is able to give you some answers, or at least some new avenues to explore.

Petra said...

Words can just not express how incredibly sad I am that Jenny (and you too) have to go through this.

I fully understand that you feel that you have a competent team of medical professionals on board, just curious if these are all allopaths or whether you have included holistic minded folks as well (aa you may have better luck finding treatments for Jenny in the 'alternative' arena).

My first thought, when reading the description of Jenny's symptoms, was Guillain-Barre. But from the medical treatments you listed, it appears that that has already been considered. Other thoughts I had were mitochondrial dysfunction (not full blown disorder, and therefore the treatment may be different than the 'standard' mito cocktail), severe B12 deficiency, myasthenia gravis, and Lyme Disease.

Something to consider would be to either contact a DAN! physician (and while the treatments may appear to be 'autism' focussed, don't let that deter you. The DAN! protocol can help with a variety of ailments), or to read up on the work of Dr. Amy Yasko. It is very possible that Jenny has several of the SNPs (single nucleotide polymorphisms) that Dr. Amy has built her protocol around (and these particular SNPs are not just associated with 'autism'). And if so, Dr. Amy's protocol may be able to help with some of Jenny's symptoms.

I wish there was more I could do. My heart is truly breaking for Jenny. Do keep us posted. I so hope you find some treatments soon that will help Jenny.

sunnyrb said...

Hi I just emailed your family a little of my story. I hope I get to talk to someone in your family or to you my story is so similiar and I match almost all the comparable stuff. I have never heard of anyone else going through this. I am sending positive healing thoughts your way.:)

lgantana said...

My heart is breaking...

After reading Jenny's story, the first thing that popped in my mind was Guillian-Barre (just like eponine119 had mentioned).

My friend (who is also a homeopath) suffered Guillian-Barre after she received the swine flu vaccine back in the mid-70's. She was paralyzed for several years until she found out about homeopathy, and after being treated homeopathically, her body was then able to heal itself. She is now in her 60's, fully able to walk, and she became a homeopath in order to help educate and heal people.

I will be praying for Jenny's healing and for strength and peace for Jenny's family - God Bless you all.

Vicki said...

It looks like some studies in Canada, this has happen too. I goggled HPV vaccine reactions and went to lifenews down the page. Not sure if this helps. It also looks like this is a side affect the Merke company knows about. Yicks!!
Best of luck

Red said...

I was lucky enough to find a woman who is extremely informed about vaccines. She was the one who opened my eyes to the fact that autism could be linked to vaccines(which I believe did cause my sons autism) and then she opened our(our local homeschooling group) eyes to the dangers of this vaccine.

My heart goes to you and your family. And may you find justification for the wrong that was done to your daughter and your family.

Loa said...

This might sound out there but I would cleanse the whole body inside out. Get rid of all toxins in the body with cleanses; including colonics, metal, liver/gallbladder , candida, & full body/lymphatic cleanse. Read the book Natural Cures What They Dont Want You to Know About by Kevin Trudeau. Go to his web site www.naturalcures.com. I found him when I was pregnant and from him I have learned quite a bit. I am not saying it will cure you overnight but it might be a start. I wish you well and I hope your story travels the globe and prevents other girls from receiving the vaccine. I will be thinking of you, it will be hard not to....Sincerely, Jennifer

Angelique said...

Ginger at Age of Autism has a report of 2 more HPV deaths in Europe. Maybe the relevant agency there EMEA, European Medicines Agency, would have more info if a doctor were to inquire.

Frank said...

Stay brave and strong, Jenny. Our prayers are with you. We are spreading the words and inquiring the possibilities. Hang in there!

doubtitin2000 said...

Jenny and Family,

I do not have a suggestion, but I was moved by your story and wanted to offer you my prayers as well as some hope.

I understand, a little bit, of what you are going through. This January, I came down with some sort of debilitating condition that put me in severe pain and eventually took away my ability to walk. I, too, couldn't find a doctor who could diagnose me with anything other than a mechanical problem that could be corrected by a chiropractor. Finally, after seeing many specialists, an infectious disease doctor put me in the hospital and conducted every possible test and exam available on me, sometimes multiple times. He brought in other specialists, one of whom finally came to the conclusion that it is a form of arthritis. It has taken almost 6 months of doctors' visits, drug treatments and hospital visits to finally get me to the point where I can finally walk again without a walker.

I understand how extremely frustrating and sometimes discouraging it can be dealing with something tramatic happening to your body...especially when you have no answers. My deepest sympathies go out to you and your family. I just want to let you know that it is worth it to keep fighting. Keep the Lord close to your heart.

I will forward this link to a group of women that have been praying for me. They gave me hope with their prayers and the information about others that were dealing with unknown diseases - maybe they know someone who can help.

I will keep you in my prayers as well.

timydamonkey said...

Hi there,

I don't have the first clue what this could be but I'd just like to say I'm thinking of Jenny. When I was a little kid, my grandad was paralysed from his head down (from an accident, though, not something like this) so, to a certain degree, I know how it is. I hope a viable method of treatment is found.

bjfowl said...

Dear Jenny,

My granddaughter Amber is 14 years old and had 2 of the 3 shots in the series of Gardasil Vaccine.
Amber became ill on August 1, 2007. Within 10 hours she went from perfectly normal to completely paralyzed from the waist down. After numerous tests, Dr. Robert Baumann and the neurology staff at the UK Children’s Hospital in Lexington, KY diagnosed her condition as transverse myelitis (TM). Transverse myelitis is a rare neurological disorder of the spine caused by inflammation across both sides of one segment of the spinal cord. TM occurs in both adults and children, and typically begins with a sudden onset of lower back pain, muscle weakness in the legs, spasms in the toes and feet progressing to more severe symptoms which include paralysis, urinary retention and loss of bowel control. She was hospitalized for 21 days and her treatments included steroids, plasmapheresis, IV-IgG and later Rituxan. Please visit Amber's website for more information on her at www.hope4amber.com

Thank you and God Bless,
Betty Fowler
Email; bjfowl@aol.com

Christie said...

I am so sorry to hear about what you are all going through. I was diagnosed with CIDP over 5 years ago when I was 19 but would not count as a comparable. I posted a link to your blog on the GBS-CIDP Foundation International forum asking people to see if they could be a "comparable". My hope is that someone will be able to relate and help.

I'm sorry again for what you are going through and wish you all the best; especially Jenny. She is a beautiful girl and I hope that the doctors and help her soon!

Jim said...

(I don't know if this got lost or not)

I really do hope someone at Merck is losing sleep about this..

A hair-brained thought I had the other day was whether this could be similar to how the rabies virus attacks the body.. As you may know, there was a recent case of a girl in Wisconsin who was the first known human to recover from rabies (although a trial to replicate this treatment apparently didn't work). (A copy of the Scientific American article about this can be found at http://www.unb.br/ib/cel/pg/SEMI_6.pdf) The Wisconsin-Madison team that was responsible for the protocol worked off the theory that since the immune system can naturally kill of the virus, if you can protect the brain from it's ravenges, the body will recover - they induced coma, applied neuroprotective agensts, and let the immune system kill the virus in about a month. Biopterin had to be applied at the end (in the form of the supplement BH4 which is very similar), as rabies virus apparently depletes it in the brain (BH4 is also a supplement used in autism treatment sometimes)

I wonder - what if the HPV virus(es) can be the same as rabies occasionally? Rabies causes no serious symptoms right after you get a bit, until it finds it's way to a nerve that is - at which point it starts progressing to the spinal cord, causing damage as it goes.

Since HPV causes can cause genital warts which come and go, I wonder if it's similar to HHV - that it goes dorment and occasionally reactivates and causes problems. HHV likes to hide in nerve roots, or near them (thus causing shingles) I don't know if there has ever been a case where the HPV virus would cause paralysis, but people usually are not injected directly with 4 of them at once, as with Guardasil.

Now, if this is true, recovery depends on whether the immune system can clear the virus, and whether the nerve damage can repair itself. At least some nerves can regrow, but only very slowly - t least naturally, as with the vagus nerve healing is cases of long-uncontrolled diabetes after blood sugar is normalized. Whether nerve recovery could be increased using BDNF (brain derived neurotriphic factor) or some other nerve-growth/differentiation agent I have no idea - or whether it would be safe.

The other question is *where* the nerves are damaged. If they are damaged all the way to the spinal cord, it is a much worse situation than if some "connection" of the peripheral nerves and the cord has been broken. The fact that Jenny's paralysis was so sudden *might* indicate the latter, as nerve death that extended from the cord all the way along the peripheral nerves I'd think might be much more scattered what it would impair in terms of movement.

Another possibility is that the nerves themselves are intact, but that transmission through them is simply impaired. Biopterin deficiency has been associated with autism and dystonia (1). I don't know if it has ever been associated with paralysis, and that idea is a long-shot at best. Nor do I know if Biopterin is disrupted by HPV, although it may be disrupted by other things in the immune response to it (in the case of rabies, I don't know if it depletes the chemical directly, or if some response of the body to the virus does).

Other things can interfere with nerve conduction, although whether they can shut down condition all together I don't know.

I assume tests have been done to assess whether the paralysis is due to nerve dysfunction or dysfunction in the motor cortex of the brain? Have tests to see if de-mylineation is going on been done (which would make it a very fast-moving form of multiple sclerosis I guess)? I know that low-dose naltrexone has been shown to be useful in essentially halting MS in some cases. In demylineation is at fault, autoimmunity might be a cause. Whether that points to any way to reverse it, I don't know - although the relapsing-remitting pattern of MS (autoimmunity against myelin basic protein I think) suggests that the brain can remylineate nerve axons if the autoimmunity is shut down.

My prayers are with you.

1. Dystonia with marked diurnal variation associated with biopterin deficiency - Fink et al. 38 (5): 707 - Neurology

Dr. Mark said...

Hello,

My name is Dr. Mark Flannery and I am a chiropractor in Southern California. It is heartbreaking to read your story. Let me say first that I am no expert in treating for vaccine reactions. I have recently though helped a 13 y/o girl who was suffering from severe abdominal pain of several months after receiving the Gardasil vaccine. I am more than willing to share with you the knoweledge I gained through her treatment. If you are interested in discussing her case, you can get my contact information at www.livehealthwise.com. As I said, I am no expert on the subject and abdominal pain is a far cry from the neurologic deficit of Jenny. I will keep you in my prayers. God bless.

Trenton said...

Dr Tetlock,
Please contact Dr. Jane El-Dahr at Tulane Medical Center. She an immunologist and one of the world's leading experts on assessing and treating vaccine damage. Best wishes.

Marie-Anne Denayer said...

Dear Dr Tetlock,
I am a neurologist specializing in the care of patients with MS,an auto-immune disorder which targets the central nervous system myelin. CIDP targets the peripheral nervous system myelin. One of my long time patients, whose struggle with CIDP began 15 years ago, is now back to work, driving his car, walking short distances without assistive devices, relying on a scooter for energy conservation, thanks to Beta-Interferon-1a.I started him on this MS immunomodulator close to 5 years ago when it became apparent that the "classic" CIDP treatments (IVIG's, plasmapheresis, immunosuppressants, IV and oral steroids in various combinations)were losing their efficacy while causing worsening adverse effects. Once on weekly IM Beta-Interferon, my patient who had needed to be chronically on prednisone, was able to slowly taper the steroid down and discontinued it 3 years ago. As to the cause of his CIDP, if not brought on by vaccination (I am a staunch opponent of the indiscriminate vaccination recommendations currently in vogue and my patients know not to agree to any immunization unless cleared by me. My rule is to refuse any vaccine that has potential adverse effects worse than the disease the immunization targets),is nevertheless immune-mediated. He has an IgM kappa antibody-producing clone of "benign" (as opposed to cancerous) cells in his bone marrow.We were, after a long struggle, able to make the Veteran's Administration admit that the probable cause of my patient's condition, him being a Vietnam veteran, was exposure to Agent Orange.
Assuming that your daughter's correct diagnosis is CIDP, treatment with Beta-Interferon 1a
might be worth considering.
Assuming once more that the hallmark of your daughter's condition is myelin damage, she might benefit from treatment with 4-AP (AP stands for aminopyridine)which speeds up nerve conduction thereby "compensating" for the slowing in NCV caused by demyelination. If I can be of any further assistance do not hesitate to contact me via e-mail.
My heart goes to you as I have a daughter, now 21 years old, who in 1988 became one of the first victims of the epidemic of acquired autism. Just one other devastating neurological disorder which according to our government and medical establishment (my colleagues)does not really exist. They will be forced to listen to us, "hysterical" mothers and fathers when all these kids ,instead of joining the work force, have to apply for Social Security Supplemental Income (and Title XIX to have access to the limited programs available to young disabled adults).
If I can be of any further assistance to you and your beautiful daughter, do not hesitate to contact me via e-mail.
And yes, make sure that Lyme disease was effectively ruled out, by obtaining Lyme Serology by ELISA and WESTERN-BLOT analysis performed on blood and CSF(spinal fluid) and by obtaining a CSF Borrelia Bergdorferi PCR. Testing should be performed OFF antibiotics, steroids, immunosuppressants IVIG and plasmapheresis for at least one month to minimize the risk of false negative results.

Marie-Anne Denayer, M.D.
Connecticut.

Anne said...

Jenny - I wish for you many happy days and years. Your journey in life is an inspiration to anyone that reads your story. Blessings from Middle Georgia - Anne (Stitches by Anne)

acuprosweden08 said...

sorry to get to know you in a depressed state, to often this now happen due to environ toxin that we happen to live in/with tis toxic cocktail that we call home/earth is just getting worse,
have you ever been screen for aouto immune disorders also have you had a toxic screening done, these are the first steps to take also, the best to do is to seek out an homotoxicologist a dr, that specialize in toxic syndromes, the best one close to you is Dr, Mayfield in Phoenix Arizona,
I wopuld not be surprised if there is environ toxins lodge in nerv path and also vaccines are guided with the mercury as a preserveatory of the vaccine it self,
please seek help with your alternative path and the homotoxicologist close to you,
yours in health

Jennifer said...

Unfortunately there is nothing I know that can help you, but I did want to say I'm sorry, tell Jenny hello and hope for the best for all of you. I'll be thinking "fun thoughts" for you Jenny.

annie said...

i'm so sorry about jennys condition..

i am 17 years old and recieved the Gardasil shot about a year ago. Ever since i finished the series of shots, something hasn't felt right. I've had MRI's and been to neurologists to see what is causing my symptoms, panic attacks,migranes and blacking out. no one has linked my symptoms to the gardasil shots but i have a feeling it might have something to do with it..i know my case isn't nearly as servere as Jenny's but i just wanted to post my story.

Jenny is in my prayers.

cindy said...

Hi,

I found the following reference re: adverse events that occured in patients after having been given Gardasil:

"But more serious side effects including paralysis, Bells Palsy, Guillain-Barre Syndrome, seizures, and blood clots are not mentioned, and account for the remaining instances of negative reactions to the drug."

I do hope this is helpful. I'll keep you in my thoughts & prayers.

Cindy

tim said...

we lost our 17 year old daughter on feb. 22nd,jessica ericzon,she had her third gardasil shot 40 hours before we found her dead on the bathroom floor,jessie was an honor student and star athlete,never had any health problems,she was a great person,liked by everyone,she had just gotten accepted at suny plattsburgh to major in psychology and become a new york state trooper,i miss her sooo much,our hearts are broken,love of life is lost,i pray someday we will know what killed her,the autopsy found nothing,we were told her heart just stopped,yet they found nothing wrong with it,i just can't accept that there is no cause,a perfectly healthy 17 year old just doesn't drop dead,damn the fda,the cdc, and merck for your money grubbing tactics

smartalienqt said...

I'm sorry that I don't know any comparables - some friends of mine have taken Gardasil, but they haven't experienced any adverse side effects. I haven't taken Gardasil yet (my mom is still deliberating), but now I'm not so sure.
I read about Gardasil online, and it has been linked to paralysis in Australia as well as the US. One site I read said that most of the side effects were in people with severe allergies.
At any rate, Jenny, you are in my thoughts and prayers, and my heart goes out to you.

Andres said...

Have you heard of the low dose naltrexone(or LDN)? It seems to work on MS, Fibromyalgia, ALS, Chronic Fatigue Syndrome - which all are considered to be autoimmune diseases. Finnish woman Maija Haavisto has written a book about it , not only on LDN but other potent cures for autoimmune diseases. LDN also seems even to halt cancer and even kill cancer cells effectively. I would give it a try!!! google LDN and find out more about it! Jenny is a beautiful and lovely girl, I wish her all the best!
P.S. Get tested for Lyme Disease, not only once but for many times, it´s hard to track it down! also check: http://www.brokenmarionettebook.com/?main

Andres said...

I would also like to say that LDN is very cheap, and this might be the reason why it´s not advertised so much! It would halt the money circulation in medicine world as a potent cure for many diseases treated with expensive treatments.
All the best to You there!!

Andres said...

One more post from me.
You are talking here about Gardasil injection, which is a vaccine against papilloma virus which causes cancer. It might be that it has seriously affected your immune system, it seems to be very strong vaccine! Here you have a report of a girl dyeing after the injection. Whatever the cause, possibility of immune system or inflammation being involved in the mysterious disease is very big.

Andres said...

I have some suggestions for supplements: Alpha Lipoic Acid, Propolis, Elderberry extract,Bilberries, Cabbage (great detoxifier, also try cauliflower), Oregano, Gingko biloba, Vitamin D (higher doses than generally recommended), Vitamin C (high doses), Vitamin B12 (and also other B group vitamins and higher than recommended doses)Fish Oil (cod liver oil- high in essential fatty acids, which are anti-inflammatory, higher doses than generally recommended).
Get all the vitamins naturally, they seem to work best, when not synthetical. But i don´t know how easy that´ll be as I don´t know the extent of Jenny´s paralysis.

Few useful links:

http://www.liveandfeel.com/index.html

http://www.spiritofhealing.com/articles/html/multiple_sclerosis_and_als2.html

http://www.zhion.com/

http://www.sixwise.com/newsletters/05/07/27/the-15-healthiest-berries-you-could-possibly-eat--including-7-most-havent-heard-of.htm

http://www.bodybuildingforyou.com/health-supplements/alpha-lipoic-acid.htm

http://www.umm.edu/altmed/articles/bilberry-000225.htm

I hope this helps!
All the best to You all there!

Andres said...

well, to me it seems quite logical that jenny had "something" before receiving Gardasil shots: Guillain -Barre Syndrome, MS in early stages, or even ALS of which early onset has been brought on by the Gardasil. Vaccine shots is known to have been triggering severe neurological symptoms- like a vaccine for rabies. Get tested for Chlamydia Pneumoniae, and also herpes viruses just in case!

jessicasdad said...

for class action lawsuite info contact our lawyer at erinbrockovich.com we lost our 17 year old,jessica ericzon in february from gardasil

Andres said...

I suggest you read this!
http://www.topix.com/forum/health/als/TLHIJ3IKBITLLVBTP#lastPost