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Author Topic: my story
lisamarie
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It all started last April after using a tingling lotion (i heard that there can be a catalyst or trigger) i had numbness all over my body.


i went to the ER and was told it was anxiety. the numbness continued for weeks along with tingling pins and needles. I then had an episode where i was SURE my head was going to explode due to pressure.


These symptoms have stopped and were replaced by severe muscle pain (mostly my upper back, shoulder, and OH MY NECK!) T his has continued off and on and I have horrible cognitive problems.


I also had/have jaw pain, teeth pain, twitching, runny nose, constant phlegm, blurry vision, floating spots, plugged right ear, . . .


majorly oversensitive to light, diarrhea, joint pain, major fatigue, slight burning sensation, poor balance, increased motion sickness, dizzy, lightheaded, very emotional, getting lost, intense memory loss, . . .


difficulty making decisions, forgetting how to perform simple tasks, trouble finding words, major anxiety, serious depression, irregular menstrual pain, many bladder infections, weight loss and gain, increased intolerance for alcohol,


symptoms change and come and go, and just generally feel like I am TOTALLY LOOSING MY MIND!


I have had 2 western blots and one PCR that all came back negative for Lyme but i am sure i have it...it is the ONLY THING that adds up.


i am thinking about getting an Ingenx test done myself and pay for it out of pocket as my insurance will not pay for this. i am not working now due to my symptoms but am going to take out my 401k to do this.


I am not sure if it does come out positive will my ins then pay for my treatment being that i got the test done myself? this has ruined my life....i am getting my masters degree and I had to quit my internship, quit my job, and am BARELY functioning in school.


I can understand why some people have taken their life as a consequence. If these horrible symptoms aren't enough you can not get diagnosed.


I have also heard once you do get diagnosed (if you do) you can not get proper treatment. I am so frustrated..that is not even the word. Life to me right now does not seem worth it.

[ 03-12-2009, 10:14 AM: Message edited by: lisamarie ]

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Keebler
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Lisa,

Many here have neuro-lyme and that affects reading. I am breaking up your post in a style that is best for most here. That way you will get more readers and more replies.

---

Original post:


It all started last April after using a tingling lotion (i heard that there can be a catalyst or trigger) i had numbness all over my body.


i went to the ER and was told it was anxiety. the numbness continued for weeks along with tingling pins and needles. I then had an episode where i was SURE my head was going to explode due to pressure.


These symptoms have stopped and were replaced by severe muscle pain (mostly my upper back, shoulder, and OH MY NECK!) T his has continued off and on and I have horrible cognitive problems.


I also had/have jaw pain, teeth pain, twitching, runny nose, constant phlegm, blurry vision, floating spots, plugged right ear, . . .


majorly oversensitive to light, diarrhea, joint pain, major fatigue, slight burning sensation, poor balance, increased motion sickness, dizzy, lightheaded, very emotional, getting lost, intense memory loss, . . .


difficulty making decisions, forgetting how to perform simple tasks, trouble finding words, major anxiety, serious depression, irregular menstrual pain, many bladder infections, weight loss and gain, increased intolerance for alcohol,


symptoms change and come and go, and just generally feel like I am TOTALLY LOOSING MY MIND!


I have had 2 western blots and one PCR that all came back negative for Lyme but i am sure i have it...it is the ONLY THING that adds up.


i am thinking about getting an Ingenx test done myself and pay for it out of pocket as my insurance will not pay for this. i am not working now due to my symptoms but am going to take out my 401k to do this.


I am not sure if it does come out positive will my ins then pay for my treatment being that i got the test done myself? this has ruined my life....i am getting my masters degree and I had to quit my internship, quit my job, and am BARELY functioning in school.


I can understand why some people have taken their life as a consequence. If these horrible symptoms aren't enough you can not get diagnosed.


I have also heard once you do get diagnosed (if you do) you can not get proper treatment. I am so frustrated..that is not even the word. Life to me right now does not seem worth it.


-

Posts: 47842 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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Lisa,

This can get better. But you need an expert doctor. I'm having major coughing attacks tonight and all I can type now is to go to the Seeking Doctor Forum . . .

and look to the left and find your local support group.


Others will be by here soon.


-

Posts: 47842 | From Tranquil Tree House in my dreams | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
bettyg
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lisa,

copy KEEBLER'S BROKEN UP version of your story and PASTE to a new post in SEEKING DR. FORUM.


subject ... show closest/LARGE city, NJ LLMD needed

paste your broken up verson there.
go to bottom left corner, and mark box to receive all copies. click send.


fyi, you've got MANY NJ llmds and surrounding states, so that is not corect. llmds are LYME LITERATE MDS who practice ILADS, intl. lyme associated disease society lyme guidelines.


what lab did your western and PCR tests?


have you worked the last 5 of 10 years where you can file for ssdi, ss disability insurance claim??


we'll help you thru this and educate you! hang in there; we're walkign in your shoes. xox


Welcome; i'm so glad you found us!! You've come to the right place for education and support!


Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @

http://www.ilads.org/lyme_disease/treatment_guidelines.html


Dr. B's Supplement List
http://www.lymepa.org/Nutritional_Supplements.pdf


this link, making the most of your LLMD visit, may help you also.
http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic&f=1&t=020605#000005


please see BettyG's newbie package info on the link below; click on link at bottom of my package. Check it out as time permits for you!

http://tinyurl.com/Bettyg-NEWBIE-PACKAGE

***************

please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber
print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.


Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.

please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.

now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.

NOTE: you do NOT have to use " ", just show the name of person you are responding to, and then type your comment.

IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""

[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox

then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND

we thank you for helping us; [Wink] otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me.
------------------------------------------------------

People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.

To find your state group, go to
http://health.groups.yahoo.com/group/statenamelyme

Type your state name and lyme as one word, like this -
http://health.groups.yahoo.com/group/newyorklyme

South Carolina is the only state that needs a hyphen between the statename
and lyme, e.g. http://health.groups.yahoo.com/group/southcarolina-lyme

The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately.
*******************************************

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lisamarie
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Thank you both so much for your help...i edited my post. funny but i also had a problem reading the post...duh!

in regards to the ssi or disability how would i go about getting that as i have not been diagnosed?

Also even if i do find a LLMD (i thought i had because he was a rheumatologist but i guess they are not all LL)i don't see how my ins will pay for it. i had to jump through hoops to go to the Dr. i went to and i am not sure on what grounds they will approve a different consultation being 3 tests came back negative.

I have been told by everyone around me to give this up (including the doctors) and that it is all in my head. Do you think i am barking up the wrong tree or does this seem worth perusing?

I GREATLY appreciate your responses. i know everyone here is battling their own sickness and to think that you are selfless enough to help others brings tears to my eyes. especially with this illness and all of these symptoms. just sitting at the computer and reading is HARD.

God bless you all.

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
lisamarie
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Thank you both so much for your help...i edited my post. funny but i also had a problem reading the post...duh!

in regards to the ssi or disability how would i go about getting that as i have not been diagnosed?

Also even if i do find a LLMD (i thought i had because he was a rheumatologist but i guess they are not all LL)i don't see how my ins will pay for it. i had to jump through hoops to go to the Dr. i went to and i am not sure on what grounds they will approve a different consultation being 3 tests came back negative.

I have been told by everyone around me to give this up (including the doctors) and that it is all in my head. Do you think i am barking up the wrong tree or does this seem worth perusing?

I GREATLY appreciate your responses. i know everyone here is battling their own sickness and to think that you are selfless enough to help others brings tears to my eyes. especially with this illness and all of these symptoms. just sitting at the computer and reading is HARD.

God bless you all. I feel really grateful and much better from yesterday.

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Need Lots of Help
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LisaMarie,

I am sorry, I tried to answer you yesterday when the site went down. I am also sorry you are not feeling very well.

Most of us on this board have gone years without a diagnosis, or treatment. I am not sure how long you have been dealing with this, but it is 20 + years for me. I just got a diagnosis in Oct. 08.

You should get the igenex test done, even if you have to pay out of pocket. The test is $200. I think you request test numbers 188 and 189, which is Lyme WB IGM and Lyme WB IGG.

The other thing you need to do is go to a LLMD. Lyme Literate Medical doctor. You are up north, and I think there are way more doctors up there then down here in the south. I drive 17 hours to PA, because my health means that much to me.

Also, I have had to use Chronic fatigue and Fibromyalgia as my disability diagnosis. I don't know if you have read much about Lyme yet, but for some reason the medical world doesn't admit that we (Lymies) exist. We should all be able to be cured with a month of doxy....if you have lyme, you know that is no where near the truth.

Good luck to you. We are glad you joined the board, because you will learn a lot, but we are sad that you may be one of us!!

Kind regards,
Shalome

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DaveNJ
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LisaMarie,

Just to give you perspective and hope, i tested negative 10 times in 2+ years before starting treatment. I tested positive after 2 months...finding a LLMD was the key...wish i had know earlier myself. i am close to getting my life back after 7 months of treatment.

Dave

--------------------
On my journey to wellness - One day at a time.

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lisamarie
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i am so grateful for your replies.

so i guess where i stand now is going back to the health center (in the university) and tell them the lyme tests came up negative but i still am having symptoms to see what they diagnose me with.

i honestly do not know how you all went so many years w/ no help.

how did you even function?

I have had severe symptoms for almost a year...i can not imagine dealing w/ this undiagnosed for 20 yrs.

i remember being bit by a tick (not a deer tick--but it doesn't have to be correct?)almost 20 years ago.

i am not sure if this has been dormant since then or if it could be the underlying cause of my severe depression and anxiety

or maybe it just exacerbated it.

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
lisamarie
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i am so grateful for your replies.

so i guess where i stand now is going back to the health center (in the university) and tell them the lyme tests came up negative but i still am having symptoms to see what they diagnose me with.

i honestly do not know how you all went so many years w/ no help.

how did you even function?

I have had severe symptoms for almost a year...i can not imagine dealing w/ this undiagnosed for 20 yrs.

i remember being bit by a tick (not a deer tick--but it doesn't have to be correct?)almost 20 years ago.

i am not sure if this has been dormant since then or if it could be the underlying cause of my severe depression and anxiety

or maybe it just exacerbated it.

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
TerryK
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I'm sorry you are having such a hard time. Hang in there, you will get it figured out. It may take some time so try to be patient.

What was the lotion you used and where did you get it? Could it have been contaminated with something? It almost sounds like you've been poisoned. Did you save the lotion?

A lyme literate MD may be your best choice in getting this figured out because not only do they look for the possibility of lyme but for other illnesses that can mimic lyme. Have you had testing for other causes of your symptoms?

Lyme symptoms can overlap with other things like heavy metal exposure, viral illness, thyroid disease, candida, exposure to mold in those who are sensitive etc...

From ILADS guidelines:
http://tinyurl.com/822xu

Continued Importance of Differential Diagnosis

"The differential diagnosis of Lyme disease requires consideration of both infectious and noninfectious etiologies. Among noninfectious causes are thyroid disease, degenerative arthritis, metabolic disorders (vitamin B12 deficiency, diabetes), heavy metal toxicity, vasculitis, and primary psychiatric disorders."

"Infectious causes can mimic certain aspects of the typical multisystem illness seen in chronic Lyme disease. These include viral syndromes, such as parvovirus B19 or West Nile virus infection, and bacterial mimics, such as relapsing fever, syphilis, leptospirosis, and mycoplasma."

Most of us went to many doctors looking for the cause of our illness. Often if you go to a rhemuatologis you will end up with a CFS and/or fibromyalgia diagnosis. Both illnesses of unknown origin and in my non-professional opinion, often caused by infection and/or chemical exposure.

I've known a few people who had symptoms that seemed like fibromyalgia but it turned out to be parathyroid. Their symptoms went away once they were treated for the underlying cause.

As far as insurance, many LLMD's don't take insurance but there are a few who do. Some you pay up front and then bill your insurance depending on the type of insurance that you have.

I've had several insurance companies and none have denied my claims as I searched for the cause of my illness. Not all insurance will pay, it depends on the type of insurance plan you have so you will need to check into that because certain types of insurance will only cover doctors and treatments that they control. This is typical of HMO type coverage.

Keep asking questions here as you search for an answer. There are a lot of people here who have been through the gamut in looking for the cause of their illness.

Go to the seeking doctor section of this website and ask for a reference to a doctor in your area:
http://flash.lymenet.org/scripts/ultimatebb.cgi/forum/2?

You may be able to get testing for thyroid and some of the other issues mentioned above from your regular doctor?

Wishing you quick answers to your health concerns.
Terry

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jtavares76
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Lisa...you have come to the right place for resources.

I am a newbie myself and our symptoms are very similar. My test continues to come back negative as well so I am seeing an LLMD in June.

Surprisingly, my neuro and PCP both believe I have a chronic case of lyme disease and are on board with me seeking treatment from an LLMD.

My PCP continues to run other tests to rule out other illnesses but she was pretty up front that Lyme tests run at regular labs are highly inaccurate.

Additionally, the members on this site offer a wealth of knowledge. The best thing you can do is educate yourself. You'd be surprised how many doctors have no clue about lyme disease.

I wish you the best with your health. You shouldn't have a problem finding an LLMD in the Northeast although many are booking 90 days or more out.

Good Luck,
JT

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lisamarie
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the lotion i used was to help alleviate muscle pain...i did not keep it.

i also did get all bloodwork done and everything turned out ok

i am afriad my ins will not pay for another referral to a LLMD but that still has yet to be seen.

--------------------
Lisa

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TerryK
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Hi Lisa,
Maybe the lotion was just a coincidence since you were already having muscle pain?

Perhaps you could call your insurance company to see if they will pay? It's worth a try.

Maybe you could get a copy of your blood tests and if some of the common mimics haven't been tested, take the guidelines from the link above and ask your doctor to test them for you?

Terry

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Need Lots of Help
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Lisa,

You have to go to a LLMD that others have gone to with good results. I pay for mine out of pocket, and I don't even have a 401 k to rob from. [Frown]

You may also have candida issues, which only a holistic doctor can help you with.

Oh, and one good month of doxy could turn your negetive to a positive. Wait........your WB was negetive?? What bands were shown??? Ask, get a copy of the results. Please, to keep yourself sane, pay out of pocket, and get the Igenex test.

Really after 20 years, I can't work, I can't take care of my family, I can't do any of the stuff I want to do. Be safe.

Good luck....
Shalome

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bettyg
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quote:
Originally posted by lisamarie:

in regards to the ssi or disability how would i go about getting that as i have not been diagnosed?


I have been told by everyone around me to give this up (including the doctors) and that it is all in my head. Do you think i am barking up the wrong tree or does this seem worth perusing?


just sitting at the computer and reading is HARD.

lisa, 1st if reading is hard here for you; is it which of these reasons:

1. print too small; ENLARGE it using VIEW, SIZE, LARGEST; i also use control and + key together and enlarge it even more.


2. screen too BRIGHT; i have taken brightness and contrast down to 0 - 5 at most for my extreme sensitivity of light like looking directly at the sun.


3. are post all long posts and NOT BROKEN UP as i requested of you/all who come here if they want neuro patients help?


ssdi, disability is NOT BASED ON ANY ILLNESSES!


it's how many hours can you work PHYSICALLY?

0-2 hrs., 2-4, 4-6, and 6-8 hrs.

SITTING, STANDING, LIFTING, CRAWLING, BENDING, CLIMBING, USING YOUR HANDS, COGNITIVE SKILLS, etc.


if you do NOT have a SUPPORTIVE primary dr. or anyone who believes in YOU; you won't make it thru this hell of stress.

your medical documentation by drs. needs to support also what has gone in the past to agree with these special Q/A forms DDS sends to us; REPEATED ENDLESSLY!

have you worked 5 years CONTINUOUS out of the last 10 years where you have 20 quarters in ... REQUIRED OR FORGET IT.


i have detailed info galore in my newbie package links, use table of contents to read what is in there, and if interested, i'd block copy all that info AT THE END OF THE PACKAGE posted, and PRINT it to read/reread to grasp it all.


if you can get all the NECESSARY SUPPORTIVE PAPERWORK done and other THOROUGH files supporting drs. Q/A; you can WIN, 1ST TIME, 1ST STEP vs. the 5 yrs. of hell i went thru getting mine on my 2nd claim going back 3 yrs. BUT EXCLUDING MY 1ST 2.5 YRS. ON 1ST CLAIM!


good luck and talk it over, BUT PURSUE YOUR HEALTH NOW! so you can get it into remission and have QUALITY OF LIFE AGAIN! xox

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lisamarie
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i am not sure why it is hard to read. it seems like the words blend together w/ the words next to it and the lines below it.

i have a dr appt w/ a LLMD a week from today which is great. however the dr charges $425 for the 1st visit.

i am not sure how i am going to do this.

--------------------
Lisa

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LisaS
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Good luck Lisa, this disease is not easy and when you have it for years and years, like most of us, you just learn to cope. If I had known at the beginning, what I know now, I don;t think I could of done it. I gathered strength along the way from people on here mostly!

--------------------
https://www.facebook.com/profile.php?id=1660435643

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lisamarie
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Thanks for everyone's responses!

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
lisamarie
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Thanks for everyone's responses!

--------------------
Lisa

Posts: 16 | From new jersey | Registered: Mar 2009  |  IP: Logged | Report this post to a Moderator
Jane2904
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Don't give you up Lisa!!

In May it will be one year since we started on this Lyme journey.

My daughter started with many symptoms that could not be diagnosed.

We did get a positive WB for Lyme after two weeks of treatment.

We feel that either Her Lyme was not properly treated or Bartonella is causing her symptoms at present.

We are going to see a Lyme specialist in May as her regular non lyme doctors feels it's all anxiety.

I understand the symptoms will cause anxiety, but anxiety is not the cause of all her symptoms!!!!

So hang in there and yes A Lyme dr. is what you need.

Best of Luck, Jane

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