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» LymeNet Flash » Questions and Discussion » Medical Questions » Clinically diagnosed with lyme, negative testing...Worried I'm imagining it all?

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Author Topic: Clinically diagnosed with lyme, negative testing...Worried I'm imagining it all?
jenniferk32
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This is long, but please read it, I need some consolation, support, and words of advice from people who know about this disease.

I definitely had the erythema migrans rash, back in the year 2000, when I was 25. I had just returned from campping. I had no clue what it was and I didn't go to the doctor because I had no insurance. I had no history of psychiatric problems.

Six months later, I started having night time hallucinations. Visual at first and then auditory and olfactory. I became extremely sensitive to noise, lights (bright, flashing, fluoorescent, etc). I became incredibly anxious and agitated by them, especially the noise.

I started having intense mood swings and I became extremely upset withing a matter of seconds.

When upset, I started hitting myself, pulling my hair, slamming my head against walls, etc.

I had difficulty speaking and finding words at times. Sometimes what I say makes no sense whatsoever.

Some other sympptoms include:

Feeling detached from myself and from reality

Very disturbing intrusive thoughts

A lot of muscle twitching and balance problems

Inability to read at times (letters look like alien symbols).

Electrical shock sensation in my head

Shooting, stabbing pains in my body

Very stiff and sore neck and shoulders

Crackling sound/sensation when I rotate my neck

Diagnosed with fibromyalgia/horrible upper back tenderness and soreness.

Shooting pain and then numbness in my arms (usually left) and I can't use my hands/fingers for about 10 minutes.

Left side of face has drooped at times, but not for long (maybe 30 minutes or so).

Joints in my fingers, toes and knees hurt and are stiff.

Anyway, there are lots more. But back in 2007 I read an article on Neuropsychiatric Lyme and it was my "Aha" moment. I realized I had every symptom and plus had the rash 7 years before.

I went to my regular doctor and she acted like I was a hypochondriac, was very condescending towards me. She reluctantly gave me an Igenex/ western blot test. It was negative, although I had some antibodies on every band. I felt stupid. She said it was all anxiety and stuck me on Zoloft, which didn't help.

Fast forward to 2010- anxious and irritated 24 hours a day, and all my psych problems got 10x worse. On thanksgiving day I attempted suicide after my boyfriend and I got into a horrible fight. I had tried to leave and he was worried I would crash, so he restrained my wrists and I totally snapped. I don't even remember what all I did, but I do remember feeling my teeth crunch THROUGH the skin on his chest. Yes, I bit him, like an an animal. He sarted screaming he was going to call the police.

If I went to jail, I would lose my teaching credential, my ability to take care of my kids, and probably custody of my kids. So I locked myself in the bathroom and downed every pill I could find.

Anyway, I survived. But I ended up in the psychiatric hospital 2 more times over the next two months for episodes of severe psychosis. I was put on a mood stabilizer and Celexa. I have to admit they have helped quite a bit with the moods but not at all with the neuro and skeletomuscular problems. I still twitch, have the numbness, electrical shock feelings, stiffness, pain, etc. Everything except the mood problems.

But it drove me to desperation and I still was convinced I had lyme, so I shelled out the $$ to see a LLMD even though it is not covered by my insurance. He said that he is 100% positive that I have it.

But guess what? Another negative test, this time through Spirostat which is a blood PCR test with molecular confirmation. I've heard it's one of the best.

The doctor still thinks I have it, but he seems kind of unsure. I'm terrified that I DON'T have it and that I'm just plain psychotic, beyond help.

At least if I have lyme then I feel like there is some hope and that it's not all in my head, or that it's my character or personality. And I don't want to be on psych meds my whole life.

Plus, my problems have greatly contributed to the demise of many good relationships. Especially this last one, which enden so horribly. I thought he was the man I was going to marry, and he's gone.

Please help...do you think I have this, or am I just a mental case? I was NOT like this at all prior to that damn camping trip and the rash (never saw the actual tic, but I read they can be the size of a pin head and often go undetected).

Oh and when I started Doxy my psych/mood problemscam back the 4th and 5th days on it. I feel like I was almost on the verge of psychosis again but I kept telling myself it wasn't real and would go away. I think it was herxing??? But now the doc raised my doxy from 200mg to 400- today is my 4th day and I feel fine. Shouldn't I herx again with the increase if I really have it?

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Lymetoo
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Would you like me to move this to Medical Questions?

With an EM rash and symptoms following it.. it's pretty clear to most of us. An EM rash is DIAGNOSTIC of Lyme. Period.

and yes, you will herx again

[group hug]

and PS .. Many of us felt we were imagining things! Especially when we began herxing. I remember thinking... Why am I doing this to myself?!

--------------------
--Lymetutu--
Opinions, not medical advice!

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jenniferk32
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Yes, you could move it. Thank you
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raw vegan runner
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I do not have a positive test from anywhere either. The reason 2 doctors and I think it is Lyme is because we have ruled EVERYTHING else out. I have had hundreds of bloodtests run for everything we could think of...and then some. Nothing came back with enough roof of anything else, but there were some things pointing towards Lyme.

Your symptoms DO sound like Lyme. I had a similar reaction to doxy. I was herxing like mad by day 3 at 100mg bid but didn't when he upped it to 200mg bid.

I question myself constantly. I have gone through phases where I convinced myself I didn't have it(and didn't treat it) only to become even sicker.

Ask your PC to run some tests. I often go in under the guise of curiosity..."So Dr. I was doing some reading and I was wondering if you thought xyz sounded similar to what I might be dealing with? Could we perhaps test for these to 'rule them out?' Maybe then we will have a better picture of what is going on." It makes the Dr think its their idea instead of yours. I find that if I go in and act like I know what I am talking about, they get intimidated and shut me down. If I act only moderately intelligent, it goes over better. I only have one Doc who actually listens to me and is willing to read studies/websites/etc and work with me.

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5vforest
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Jennifer,

I'm sorry you've had to go through all of this.

Yes, it does sound like you have Lyme. EM rash, lots of symptoms, ind tests. It's definitely possible that all of your psychiatric issues are related to neuroborelliosis, but also possible that some of them are due to Lyme and others are due to the stress of being sick, not having anyone believe you, etc.

Have you treated for LD at all? Do you trust your Lyme doctor? If you do, I would let him decide your direction for treatment. It's deinitely not too late to treat for LD, and I suspect that with the proper treatment you would improve.

If you don't have a doctor you can trust, I would find one as soon as possible; it makes everything so much easier.

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gardengal
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Oh my gosh, my neuro/psych symptoms were /are the worst! I always said I'd rather have the pain and fatigue any day. At least I can take something to help or rest. But the emotional swings (black moods actually) were the scariest things.

I never had a problem in 50+ years like this until I started getting many other symptoms that were physical and I was diagnosed with Lyme. I'm thinking it may actually be a co-infection rather than my Lyme. I've read a couple of them can be brutal in this respect.

I thought I was losing my mind when I would have emotional swings every 28 days. I went to all kinds of specialists including an OB/GYN. I figured it must be hormone related. Nope. I was told all checked out fine and practically patted on the head. Argh!

After my Lyme diagnosis my LLMD told me bb has a 28 day cycle. Once I started ABX those symptoms started going away until I had them no more. Recently they came back with a vengence along with my other symptoms because of a change in my meds.

It's like my whole personality changes. Really scary stuff. I have to try and stay away from everyone when I get like this. My "filter" seems to be broken and I may say something I regret.

I also get extremely depressed - like a black hole with no way out - absolutely hopeless. Now I know when I do get like that I will be okay in a day or so. It still is very hard to be in that place though.It's like all reasoning goes out the window.

It know was absolutely caused by Lyme or a co-infection. Hang in there!

~ GG

--------------------
The earth is my altar,
the sky is my dome,
the mind is my garden,
the heart is my home,
and I'm always at home...


Eden Ahbez, 1908-1995
American Musician, Songwriter and Poet

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Lymetoo
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on the move to Medical!

--------------------
--Lymetutu--
Opinions, not medical advice!

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sparkle7
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I'm so sorry to read this about how you are suffering. Drooping face sounds like Bell's Paulsy. I don't have these kinds of symptoms but Lyme & the co-infections seem likely. The tests aren't accurate.

I would suggest that you have to try to sort out your symptoms & try to treat them in a systemic manner - if possible. I would suggest a parasite cleanse since it's good to rule that out right off the bat.

Many symptoms of Lyme, etc. are also similar to other illnesses. With the tests being so inaccurate - it's really hard to know what to treat. I've been ill for over 15 years & I'm still not sure what I'm fighting.

I'm just going to mention this, as well... (some people may think it's out there but I heard a radio show about it a week or 2 ago) - especially, since you are saying you had hallucinations & electrical shock sensations -

http://gangstalkingworld.com/techniques/

http://stopos.info/stopos.pdf

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sparkle7
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More...

http://www.osnanaimo.org/

You may be a victim of electromagnetic harassment if:

You experience burning sensations on your skin or internal organs.
You feel pin pricks on various parts of your body.
You feel some type of 'energy' moving inside your body.
You experience extreme head pains.
You feel drop-in-your-tracks fatigue on a regular basis.
You continually have difficulty sleeping.
You experience forced speech.
You experience uncontrolled-by-you movements of limbs or other body parts.
You hear the voices of other people inside your mind with no other signs of mental illness

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5vforest
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Sorry sparkle7, but are you serious?

This is the kind of stuff that discredits Lyme patients and the Lyme community.

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BoxerMom
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Jennifer - I had SO MANY of your symptoms when my dormant Lyme and co-infections reactivated in my 20s. I honestly thought I was going crazy.

I lived like this all through my 20s. Being uninsured, I saw only a few doctors, but nobody could tell me what was wrong, anyway.

The emotional stuff calmed down in my 30s, but then the exhaustion set in. It was preferable, but not by much. I dragged myself through my 30s.

Finally, at 39, I took my health into my own hands and saw a Lyme specialist. Bingo!

My tests were also negative. Don't let that mess with you one bit. These tests are notoriously unreliable.

My worst co-infection was Babesia. I attribute a lot of my (and your) symptoms to that co-infection. You may want to try a round of Mepron/Zith.

Yes, you will herx. But you will get better.

Don't give up your life to this stupid disease.

Please stay with your LLMD and treat your Lyme. With the EM rash and these symptoms, you have Lyme.

I'm sorry you're having a hard time. We relate. Keep us informed on your progress. We're a pretty cool group.

--------------------
 - Must...find...BRAIN!!!

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steve1906
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Keep seeing your LLMD, You'll start feeling better soon.

--------------------
Everything I say is just my opinion!

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tick battler
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Hi Jennifer,

I have been in the Lyme nightmare for 4 years researching every night to heal my family of 5. I have read about most every symptom and your symptoms sound like classic lyme and bartonella to me.

You should not feel stupid for getting a negative Igenex test...the fact that you had some positive bands means exposure to lyme. That in my mind is confirmation. I would recommend posting your results in a new post to see what others have to say about it. You can get help interpreting it.

Two of my three children had negative lyme tests when we started treatment. One of those later had a positive test after being on antibiotics for a couple of months. This often happens, so if you are still looking for confirmation, you may want to retest after 8 or so weeks of treatment. My young daughter never had a positive lyme test (only showed band 41) but later had positive tests for bartonella and two strains of babesia.

We have found that even some LLMD's are scared to make the clinical diagnosis of lyme...for some reason they want to see it on paper. Don't let that fluster you. Just keep researching and reading. You have found a great resource here. Pretty soon you will know as much as most doctors.

You may want to test for bartonella, which causes many psych issues. However, keep in mind that these tests are not very accurate and there are many false negatives. You can't rule it out with a negative test. I had hallucinations prior to treatment. Amy Tan, the famous author, had them too...you can google her name with lyme to read her lyme story.

Most of us also have ehrlichia and babesia as well, so it is likely they are there too. Once again, the testing is not very accurate.

You might also read the book, "Everything you wanted to know about Lyme Disease" by Karen Vanderhoof-Forschner...it is very helpful.

You came to the right place and you will get better with treatment. It is a good sign you herxed on Doxy. It's also just another indication that you have Lyme. Keep doing your research and asking questions.

Oh- as for the PCR tests...from what I know, yes they are very accurate if the blood you used for the test happens to have some spirochetes in it. But if not, you are out of luck. So most don't bother with PCR tests.

I hope this helps some. Best of luck to you. Glad you found us!

tickbattler

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sparkle7
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re: Sorry sparkle7, but are you serious?

This is the kind of stuff that discredits Lyme patients and the Lyme community.

---

Yes. I am serious. I don't think having an open mind discredits anyone except those who are ignorant.

FYI -

Project MKULTRA, or MK-ULTRA

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

On the Senate floor in 1977, Senator Ted Kennedy said:

The Deputy Director of the CIA revealed that over thirty universities and institutions were involved in an "extensive testing and experimentation" program which included covert drug tests on unwitting citizens "at all social levels, high and low, native Americans and foreign."

Several of these tests involved the administration of LSD to "unwitting subjects in social situations." At least one death, that of Dr. Olson, resulted from these activities. The Agency itself acknowledged that these tests made little scientific sense. The agents doing the monitoring were not qualified scientific observers.[9]

---

This was over 30 years ago. Do a little research - look at FOIA documents, patents, declassified documents. Law suits have been awarded to people who were experimented on - soldiers, prisioners, CIA officials, regular folks... I didn't make this stuff up. It's still happening - hidden in plain sight.

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5vforest
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Thank you for the link on Project MKULTRA, I had not yet heard of it.

I am not blind to the horrible things our government has done to its citizens and people from other nations. Not just medical experimentation but also social manipulation, like COINTELPRO.

But more specifically I am interested in your claims about electromagnectic harassment.

It is very far out there to suggest that someone having psychiatric issues that may or may not be caused by neuroborelliosis could actually be a subject of "electromagnetic harassment". However, I will try my best not to make any final judgement on the subject until you have a chance to present your evidence and cite your sources.

I am trying to look through all the links at osnanaimo.org. I was surprised when I saw a show on the History channel called "That's Impossible". However, when I looked at the wikipedia page for the show, it says:

"Each episode has a "to do list", which means that if this technology were to be perfected, it would have to do certain things on the list."

and

"[Season 1, episode 6:] A look into the mind reading and control, including the possibility of communicating with people using only their minds with brainwave-transmission technology, and computers which can read a person's thought."

It seems that this television show is not based on real technology, yet the website you provided is citing this episode as evidence that there are machines that can read your thoughts.

Again, feel free to provide any more sources you think I may find convincing.

But until these conspiracy theories (or would you object to me calling them that?) are backed up with some real evidence, I think that it would be best to keep them off the board and refrain from suggesting them to potential Lyme patients.

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Energyman
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EM, symptoms - you HAVE LYME!
When the symptoms are so bad it's also suspectable that you might have bartonella or babesia too.

You don't need a blood test if you've had an EM.
You need a good LLMD or you're lost.

Sorry to say that but i've learned it the hard way.
And please ignore sparkle7's stuff. Personally i think it's pretty annyoing to post such stuff for someome who's looking for real help.

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5vforest
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Thank you for the support energyman. I've PM'ed the mods and will keep you updated on what they say.
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chiquita incognita
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In addition to lyme, something else to look into:

Gluten intolerance----according to clinical nutritionist Elizabeth Lipski, CCN MS and to nutrition authority Paul Pitchford, undiagnosed and untreated gluten intolerance can lead to schizophrenia and other forms of psychosis.

I have a friend who is a therapist, who knew someone who recovered in full from schizophrenia---he had been hospitalized-----just from gluten avoidance alone. Just so you know.

In my case gluten was causing other neuro symptoms, very severe ones but not mental/emotional stuff. I tested "Not allergic" to wheat and that was such a farce! An ND said that she thinks food allergy testing is very inaccurate and that the best thing is to simply eliminate the suspected food for a while, then reintroduce it to test for relapse.

Another thing to check into, in addition to lyme:

Heavy metal toxicity

This too can cause neuro issues, more in the line of MS with mercury, but I would imagine (I am not a doctor and can't say for sure) that if it does that, then it would and could cause mental/emotional stuff too.

You take care and please know that just when the darkest hour seems to be dawning, that help is right around the corner. The darkest hour is just before the dawn, they say. Take care, we will be thinking of you and praying for your healing.

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chiquita incognita
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Here is an article about the neuro-psychiatric evaluation of lyme disease, and it contains many of the symptoms you are talking about:

http://www.mentalhealthandillness.com/tnaold.html

Dr B's diagnostic list can be found here: http://www.lymediseaseassociation.org/BurrGuide200810.pdf

Follow the link to the second one which you will be redirected to. From there, go to the main website, click on "Medical" and then you will find the symptom checklist.

I think you will find it very, very validating.

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Lymetoo
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Let's look at the possibility of LYME and coinfections FIRST. That is why the person is here.

With an EM rash and plenty of symptoms, this is the obvious route.

I'm saying this as a member of Lymenet, not as a moderator.

--------------------
--Lymetutu--
Opinions, not medical advice!

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deerose
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Lyme had neuro effects for me bigtime.
I shared some of your symptoms plus others.
My ultimate dx is nuerolyme, erlichia, babesia, bartonella in no order of suffering.

Bartonella especially for me had seriously nightmarish mental and emotional symptoms.
And surfaced after an herbal protocol put lyme into the background.

Mainly depths of black anxious doom and crippling anxiety.
i wanted to die, tho not suicidal as such.

I am still amazed at how the infections affected me mentally/emotionally in such dramatic ways...

and how as treatment progresses they have disappeared in that arena along with many more obviously physical symptoms.

the only remnant is a tiny bit of occasional gloom doom which I can nip with hoomeopathic anti anxiety preparations...but not even that for weeks at a time.

Without rehashing what others and the symptom links will tell you and what others are affirming..

it sure sounds like you have a very high probability of infections...
lyme for sure from the EM rash...
alone it is enough to diagnose...

and every lyme literate practioner worth their salt does not depend on the tests but uses clinical diagnosis

mine did not use tests..I could not afford them out of pocket.
Only the CD57 so she could track progress. She would not treat without it.

but I am very good at tracking symptoms and changes...I suspect lots out there are not...unlike folks in here.
:-)

I am so sorry for the incredible suffering and loss you have endured.

I believe that with the EM rash and plenty of consistent symptoms,
there is great hope for you with treating lyme and coinfections.

--------------------
Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein

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TerryK
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Ditto - what tutu said.

Lyme is a complicated and political illness.

Reading the book "Cure Unknown" may help put things in perspective. Written by a respected science journalist who has first hand experience with lyme and co-infections. Her book is well researched and revealing. Here is a brief look at parts of the book as presented in Psychology Today blogs - written by the author of Cure Unknown
http://www.psychologytoday.com/blog/emerging-diseases

Also, look further down the blog for other entries on lyme that might interest you. Here is one

"An infection can change your personality --there's plenty of proof"

Best of luck to you.

Terry

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sparkle7
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There was another person here who posted that they were hearing music in their head a couple weeks ago & was wondering if that was a Lyme symptom.

I'm trying to offer suggestions to Jenniferk as to what may be happening. She has some pretty extreme symptoms. I'm not going to focus on her problems & repeat the ones which sound suspect to me in regards to electronic harrassment.

I'm not trying to make this thread about "conspiracy theories" - it's about one preson's suffering. I've been studying these so called "conspiracy theories" for many years.

There are patents, declassified documents, FOIA requests, books, studies, etc. for these things I mentioned. I would not post a link for something like this that doesn't have multiple cross-references.

Just take a look at what DARPA spends your tax dollars on. If anyone would like a list of references - go do the research yourself. I'm tired of spending hours posting things here that people don't want to believe exists.

I'm sorry you don't want to open you mind to see what is possible. I'm also sorry to make this thread into a debate. If anyone out there is going through some sort of electronic harrassment - it sounds to me like it would be hell on earth.

I just mentioned it since Jenniferk's symptoms are pretty extreme - even by Lyme standards. I meant this to be helpful to her.

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BoxerMom
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I don't think her symptoms sound extreme at all. I had every single one except the electrical and shooting pains, and the facial palsy.

I was an emotional nightmare. I can't believe I held it together.

--------------------
 - Must...find...BRAIN!!!

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Lymetoo
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quote:
Originally posted by sparkle7:
There was another person here who posted that they were hearing music in their head a couple weeks ago & was wondering if that was a Lyme symptom.


-
This is EXACTLY what author and Lyme patient AMY TAN experienced. Not extreme at all. Just another day in Lyme World.

--------------------
--Lymetutu--
Opinions, not medical advice!

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RDaywillcome
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MAYBE
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tick battler
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Jennifer,

I don't know what "electronic harrassment" is, but just to clarify about EMF's...they are real and do often become an issue for lyme patients, as they have for me and for many others on this board. If you are interested, go to Dr. Mercola's site and see his numerous articles about this.

However, at this point, you need to start with addressing lyme and coinfections, which I'm pretty sure you are dealing with. Along with this, there are steps you can take to help lessen symptoms and speed recovery such as: diet, exercise, reducing mold exposure, heavy metal chelation, and reduction of EMF's in your environment.

All of these things can make lyme symptoms worse and should at some point be looked into during treatment to optimize recovery.

tickbattler

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Lou B
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Hi LymeNet Users,

On any Internet forum / BB you will find users who post some theories that seem to be "way-out-there".

I suggest you evaluate the information posted and base your opinions of the validity of that information using your own personal judgment.

Take care,

--------------------
Lou B
 -

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sparkle7
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I appreciate your open-mindedness, Lou B. If this info helps someone out there - then I did a good thing by being "way-out-there"...

I do believe that there are people being electronically harrassed. Whether it's someone posting here - hard to say. There are very peculiar things associated with Lyme.

Take a look at Morgellons Disease. Those people are testing positive for Lyme. Isn't that a bit odd? Can you say that those fibers coming out of their skin are an illusion? That these people are crazy?

I don't think so... So, why decide that people who may be harrassed electronically are out of their minds? Some people think those with Lyme, co-infections, CFS, Fibromyalgia, multiple chemical sensitivity, parasites, etc. are mentally disturbed.

Someone once said to me, straight up, that people who think they have Fibromyalgia are just saying that to get painkillers. This was at a party & this "girl" - whose father was an MD - was smoking a joint... Was I smoking? - no.

I think we need to give people some credibility & accept that we all aren't the same. There may be illnesses or afflictions that may have "bizarre" causes.

After researching this & other things for 15 years & being ill, myself... I'm not going to say another person's suffering is psychosomatic.

I think we need to have some compassion. There are some wild things happening in this world these days. There is plenty of evidence that technology for electronic harrassment exists.

I don't see why it wouldn't be used or tested on people. Especially, given the track record of medical testing. The documentation does exist... whether people want to read it - is another matter.

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kday
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quote:
Originally posted by Lou B:
Hi LymeNet Users,

On any Internet forum / BB you will find users who post some theories that seem to be "way-out-there".

I suggest you evaluate the information posted and base your opinions of the validity of that information using your own personal judgment.

Take care,

People who post valuable and credible information are banned, and people who post loads of irrelevant unsubstantiated conspiracy garbage are embraced.

An interesting approach to moderation.

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sixgoofykids
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Kday, people are not banned based on content of their posts. They are banned based on breaking a Lymenet term of use.

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

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lymie_in_md
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Kday -- according to IDSA and traditional medicine all the information we post on chronic lyme is irrelevant and unsubstantiated conspiracy garbage. All the alternative information would be considered irrelevant and unsubstantiated as well. The freedom of content is important here as long as it follows the rules.

A suggestion to Jennifer is to have someone help you build a faraday cage and see if that helps.

--------------------
Bob

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Lymetoo
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Why are we looking for zebras when there is a horse in the stall?
[confused]

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymie_in_md
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Lyme causes emf and eletrical and light sensitivity and I guess I should qualify my suggestion. A test for improving the symptoms is to build a faraday cage (some can be done very cheaply) or something that reduces the impact of the many frequencies passing through us daily. If you do this, you might find it does improve symptoms.

I'm not saying there is or isn't an issue with EMF. I'm saying there is an inexpensive way to find out how much of symptom are caused by EMF. And I'm not saying you shouldn't investigate lyme because it does create the issue. And any information you can give to your doctor the better.

Easy ways to diagnose things such as
doing a parasite cleanse instead of testing for parasites. You'll know from the cleanse if you had parasites. EMF issues can be discovered by building a faraday cage or buying protection. If the symptoms improve then you know it was a problem. If you suspect your environment is a problem stay some place else for a while and see if it helps.

A site you can peruse for EMF and there are many others:

http://www.lessemf.com/personal.html


http://www.rense.com/general82/emf.htm
quote:
Many Report Symptoms
Of EMF Sickness
By Frans van Velden
MedicalNewsToday.com
8-11-8

"A lot of people report symptoms similar to yours, and there is even a name for it, electrical hypersensitivity (EHS)", writes Chiyoji Ohkubo of the EMF-radiation project of the World Health Organisation (WHO) in an e-mail to a patient. Though the WHO confirms the problem is serious, there will be a 'fact sheet' by the EMF-project within a few weeks, totally denying the existence of radiation sickness. The information is based on instructions by a working group of five people in Prague, 2004. It reads like a political manifesto, to hush up the epidemic and leave the patients behind without any care.

Symptoms of electromagnetic radiation sickness are for example sleep disturbances, dizziness, heart palpitations, headache, blurry sight, swelling, nausea, a burning skin, vibrations, electrical currents in the body, pressure on the breast, cramps, high blood pressure and general unwell-being. According to many testimonies of victims the symptoms appear in the vicinity of sources of electromagnetic radiation, like GSM- and 3G (UMTS)-antennas, cellphones, DECT wireless telephones and WIFI wireless networks. Many times the experiences are blind. Radiation measurements taken afterwards and investigations show, that the radiation density indeed is increased. Many sufferers find out the relationship with the radiation, when they stay for a while elsewhere, where the symptoms diminish or disappear. When they return home the symptoms immediately appear again. Many of the patients decide to move to another place. Others try to shield themselves against the radiation, for example building a Faraday cage of fine wire mesh.

Canary bird sings again

In one documented case a canary bird did not sing anymore and lost his feathers. The cage was at fifty metres distance from a GSM-antenna. After his owner had put a Faraday cage of fine wire mesh around the cage, shielding against part of the radiation, the bird started singing again and did not pick his skin anymore. So, the symptoms are real and not imaginative. That is confirmed by the co-ordinator of the EMF-radiation project, Michael Repacholi. He says, he has met many people who suffer from radiation sickness and electrical hypersensitivity. "I know how much it affects people and that the symptoms are real", he writes. But the EMF-project refuses to comment the many thrustworthy and verifiable testimonies. Repacholi says it is his responsibility, to tell the public that the problems do not exist, since science can not find 'electrosensitivity' in people. Of course not. Humans do not have a sense for the electromagnetic radiation of the relevant frequencies.

Secretariat only

The World Health Organisation does nothing at all to recognize and take care of the many sufferers reporting electromagnetic radiation sickness. Nothing is done to prevent future victims, nothing to map the epidemic and assess the high risks. The reports are not checked by anybody, not even on a national or local scale. The EMF-radiation project does not even answer highly relevant questions about individual and collected cases. Repacholi: "WHO does not make conclusions. WHO gets its information, conclusions and recommendations from experts worldwide. WHO staff only act as the secretariat to facilitate this process and then to promote the results through normal channels of communication. WHO staff do not make the conclusions and recommendations on any issue. They are merely the administrators of the project." However, that is in contradiction with the 'fact sheet'. The instructions for this information leaflet were formulated in Prague, October 2004, by a group of five people, including Emilie van Deventer of the EMF-project. These are more than recommendations - they are instructions of a political character.

Information for the public

The information leaflet will be a political document, though it is called 'fact sheet'. It gives information for the general public, the medical world and the governments. The instructions for the public: the symptoms of electromagnetic radiation sickness exist, but it is not allowed to attribute them to radiation. Electrical hypersensitivity (EHS) should not be registered or investigated. The public should be warned against products to measure radiation density and to shield against electromagnetic radiation from GSM- and 3G (UMTS)-antennas, DECT wireless telephones, WIFI wireless networks etcetera. Measurements are to be discouraged. There should not be made any correlation between the symptoms and following diseases and disabilities. The public should be reminded that only ionisating radiation, X-rays and radioactive radiation, is considered to be able to damage health. The symptoms of electromagnetic radiation sickness should be interpreted as the consequences of stress by the introduction of new technologies.

No diagnosis, no classification

The political message is clear. Health problems caused by electromagnetic radiation are not allowed to exist, even if a lot of people report them in thrustworthy and verifiable testimonies. The base of the coming information leaflet is a political document. Governments are instructed to develop tailored information for medical practitioners. The working group writes, that governments are not allowed to propose an official diagnosis, nor to introduce a classification for handicap status. That is a reaction to Sweden, where the Federation of Electrical Hypersensitive (FEB) is a member of the umbrella organization of federations of handicapped. Indirectly FEB receives some funds from the government. A few hospitals in Sweden even have a radiation free room. Governments who ignore the instructions of the WHO, are accused by Repacholi to foster victimisation and "to perpetuate a myth". Institutions who take the reports of citizens seriously, get a warning shot across the bows.

Appropriate interaction

The EMF-project makes a small exception. The instructions say the symptoms may be registered, as Idiopathic Environmental Intolerance attributed to Electro Magnetic Fields (IEI-EMF). But the political instructions continue. Governments have to make an end to measurements of radiation densities and structures. They have to develop 'appropriate interaction' with self-help groups. At last governments have to promote dialogue, to take away the anxiousness about the electromagnetic radiation sickness. After reading these instructions the questions are: how do the lots of reports by people who are sick by electromagnetic radiation relate to this 'fact sheet'? Why WHO refuses to give comment on the many thrustworthy and verifiable testimonies and cases? Why are these reports not registered and investigated?

Epidemiological research

The scientific foundations of the instructions and the leaflet are weak. Like with asbestos the only research that can give proof is epidemiological research, because electromagnetic radiation is a man-made environmental factor. According to the website <http://www.stopumts.nl/>http://www.stopumts.nl of Etwald Goes all epidemiologic research until now found negative impact on well-being and health, from sleep disturbances to death. Moreover, it is impossible that the negative impact does not exist, since more than half of the in vitro and in vivo laboratory and provocative research finds damage. Such investigations can never fully represent true life with all the parameters of permanent exposure of living people, animals and plants. However, if most of these investigations show a negative impact, something must be the matter. Indeed there is a problem, according to the lots of reports WHO mentions.

Swiss study

Politicians should play the ball now. A growing amount of municipalities takes the anxiousness of citizens seriously, but they don't register or investigate the reports of electromagnetic radiation sickness. Politicians are not much interested in this part of public health. They wait for the results of a study in Switzerland, about 3G (UMTS) and well-being. Coordinator Peter Achermann: "we are currently in the process of analyzing the data. We hope to have a publication ready by the end of 2005." Before he warned the politicians that whatever are the results of the study, it does not say anything about postponed effects and the consequences of permanent radiation. It has been established already, that these effects exist. In a report for T-Mobile by the Jlich Institute of May 9 2005, the experts report effects on the central nervous system, cerebral bloodflow, neuronal activity, EEG, working of the brain and cognitive function. The European Reflex study found damage to DNA, which is an confirmation of earlier research and has been confirmed afterwards.

Political manifesto

Scientifically the harmfulness of electromagnetic radiation is proven, based on the many testimonies and anamneses, epidemiological research and most of the laboratory and provocative research. Nevertheless, the EMF-project of the WHO denies the existence of electromagnetic radiation sickness and even promotes the non-existence, though many scientists give a warning. The EMF-project works together with scientists who serve the wireless providers, not even keeping the appearance of independency. They simply do not take notion of or wipe away the epidemiologic research and make laboratory studies cancel each other out, which is scientifically inadmissible. The 'fact sheet' therefore is not a scientifically responsible and independent document. The information leaflet is based on instructions by a working group of only five people, organised by and participated by the EMF-project itself. It is reasonable to call it a political manifesto.

Sources:
correspondence with Chiyoji Ohkubo, Michael Repacholi of the EMF-project, WHO, Geneva
correspondence with Peter Achermann of the Institute of Pharmacology and Toxicology, Zrich
'Bobje zingt weer' (canary bird sings again) in Dutch newspaper De Telegraaf, August 19 2005
sauvonsleon.fr (42 testimonies in French around one antenna installation)
>stopumts.nl (questions about health and radiation: email [email protected])
who.int/peh-emf/meetings/hypersens_wgrep_oct04.pdf (page 8)
http://www.feb.se and many other websites, like microwavenews.com
unizh.ch/phar/sleep/handy/tnostatement.htm

Written by Frans van Velden
Frans is an accredited journalist

http://www.medicalnewstoday.com/articles/30499.php




--------------------
Bob

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sparkle7
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FYI - my comments aren't unsubstantiated. If people didn't jump to conclusions, I would post references. I have done the research. Maybe you should, too, before verbally assulting me.

Why should I go through the trouble posting references when you obviously know it all...

I have read the FOIA documents, patents, white papers, studies, declassified documents... have you? Where's your proof that what I have posted is "loads of irrelevant unsubstantiated conspiracy garbage"?

I'm not insulting anyone here. Why such a caustic remark towards me or in regards to information I have posted? Do you know everything?

Maybe you should prove to me that this technology doesn't exist...

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lymie_in_md
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It is a fact the technology to broadcast and to influence great numbers of people using EMF exists with HAARP. And there are mini versions also a fact. And they are being used and tested on citizens across the country. So I really don't understand unsubstantiated, it is a fact the technology exists to do all the stalking in Sparkle's articles. So why couldn't it be misused and why couldn't it impart long term symptoms?

--------------------
Bob

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Lymetoo
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I think we've lost Jennifer... the person we were supposed to be helping.

--------------------
--Lymetutu--
Opinions, not medical advice!

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annier1071
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Why does this "support group" always argue and go off on strange tangents. There are many groups out there, but this is the only one that does that?

You can blame ever behavior on the fact that someone has lyme disease and some things are very hurtful to others that are said on here.

Everyone here is fighting a horrible disease so why not be supportive of each other. This new person Jennifer was looking for some help and this whole post would make anyone run away!

I have yet to have the sight or ability to read these incredibly long posts filled with documented evidence of anything? I pray for day that I could write or read all of this and remember it.

Be kind to each other

--------------------
Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin.

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Lymetoo
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My fear is that newbies like Jennifer will be run off .. and that possibly they will decide Lyme must NOT be what they have.

Then if they DO INDEED have it... they will have years of suffering .. because of US.

--------------------
--Lymetutu--
Opinions, not medical advice!

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lymie_in_md
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I know some of my views are certainly on the fringe (being quite alternative), but all views should have a forum. And some of the crazy things I did on the alternative side certainly worked but a few didn't.

Jennifer put her request for help, its not on anyones mind the new world she is entering. The lyme community is certainly daunting place with it's complexity. An initiate knows nothing about how invasive lyme is on the body. And how it magnifies the power of all pathogens in our bodies. How it steals the minerals in our cells we desperately need. Or depletes the energy from our bodies. Managing this disease requires knowledge we were never prepared for. And as the days of this disease turn to years we discover a metamorphis in how we view the world. An initiate knows nothing of this.

So I guess we need to be far more careful not to overload people with too much information to soon.

However we see names only, it isn't apparent whether this person is a newbie or not unless we take the time to view their membership. My question: Is there a way to highlight newbies better so we can take better care with the information we present?

I'll be honest, it never occured to me this person was a newbie. And I agree, we do need to use better judgement when posting to topics. And I hope Jennifer and all newbies can forgive us all, for how this disease has changed us.

--------------------
Bob

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Lymetoo
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quote:
Originally posted by lymie_in_md:

So I guess we need to be far more careful not to overload people with too much information to soon.

However we see names only, it isn't apparent whether this person is a newbie or not unless we take the time to view their membership. My question: Is there a way to highlight newbies better so we can take better care with the information we present?

I'll be honest, it never occured to me this person was a newbie. And I agree, we do need to use better judgement when posting to topics. And I hope Jennifer and all newbies can forgive us all, for how this disease has changed us.

--
Thanks for saying this. The FIRST thing I do when responding to someone I haven't seen before (or I'm not familiar with them) is to look at their number of posts and their date of membership. It is right down there next to their "location." ("from")

It would be so great if everyone would do that. Just LOOK!! [Smile]

Our responses should be keeping in mind that this person is new and is likely confused trying to navigate the world of Lyme.

I have been in contact with Jennifer .. so she is still here. Thank goodness!

Thanks, md!

--------------------
--Lymetutu--
Opinions, not medical advice!

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sparkle7
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I believe there are false positives for Lyme as well as false negatives. Many Lyme & co-infection symptoms are very similar to other illnesses or can be separate psychological issues.

I don't think it's appropriate to assume everyone's problem is only Lyme or Lyme related.

I have had a clinical diagnosis & took the drugs with no effect for many months. I don't have money for additional tests. The tests are not accurate in general, anyway. I have a big suspicion that my clinical Lyme diagnosis is not accurate.

I'm sure that could be the case for others. While some symptoms can be Lyme - others may indicate some other problem. This is just a message board. We offer experience & advice to people - strangers really. We don't know anyone's whole health history or look at their medical records.

I don't think we have to worry that people will base their whole health protocol off of one thread on a message board. That seems a bit much to consider. At least, I would hope people don't do that.

I do hope that people who want to jump on me about posting "conspiracy theories" would do the reasearch first. I posted the links for a reason. It is good to be aware of the potential of electromagnetic technology.

I think there's plenty of advice for people to decide what is appropriate for them or not here. I don't think it's necessary for people to denegrate me just for posting some links to info that could be useful for someone.

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kday
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When someone asks questions about Lyme and you post links to Gang Stalking Techniques, do you really think they are going to hang around? Wow.

This is my last post here.

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sparkle7
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None of my posts have been inflamitory or insulting. Some of what was listed as "Lyme" symptoms also could be gang stalking symptoms - as listed. It's not unreasonable.

Just because it hasn't happened to you, kday - doesn't mean it doesn't happen to others. I'm not making fun of anyone or ridiculing anyone.

There are many possibilities in the universe. Lyme & the co-infections are one but there are others.

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