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Smyle 02-01-2006 06:00 PM

It's time to tell my story
 
Hello all:

This will be long and I apologize for that but I need your help.

I know I have been on this board for about a month now and have not really shared my story but now I need all your advice. As many of you know I am waiting for my results from Igenex which my Dr. has had since yesterday, but they have not called me. I have a feeling they will be negative since every other test that I have had in this odyssey excpet my eeg (not the test you want to be abnormal) has been negative. If it turns out my results are positive I will add my story to the update thread, if they are negative I know this thread will go off into the land of misplaced threads.

My story starts when I was a kid. My mom is from the Boston area so we used to travel to the Northeast every year and I grew up in Minnesota. Two lyme hot spots. As a child I had this rash -big red circle like blotches all over my legs and torso with no known cause. This was in the late 70's and although lyme was around noone had "discovered" it yet. I also had episodes as a child of high fevers to the point of hallucinating. This happened on two occasions that I can remember and noone else in my family came down with this so I don't think it was the flu. After these episodes I was healthy as a horse no problems at all until about 3 years ago. I had my two boys no problem and then had a series of miscarriages. Two bad ones that required d&c's and two early miscarriages. I could tell that something had changed in my body but I thought it was hormonal. I was very tired, and my periods had gotten shorter and very heavy. All my hormone levels were tested and everything was normal. After the last miscarriage (which didn't happen until 14 weeks and I knew that something was wrong the whole time) They did genetic testing on the baby which was a normal baby boy, as well as genetic tests on my husband and I along with a battery of all these other tests-all normal.

Shortly after this I was diagnosed with borderline high blood pressure, my back starting aching horribly, I was fatigued, I had angina and I felt like I had a constant lump in my throat. My Dr. did and x-ray of my spine and said it looked perfectly normal, I had a stress test-also normal, and un upper GI endoscopy-normal. My Dr. told me this was all stress related and tried to get me to take an antidepressant. I knew I was not stressed, I was not depressed and so I declined.

Fast forward maybe a year and my right foot starts bothering me. By the end of the day I could hardly walk on it and I thought it was a bunion from wearing heels. I also was having a lot of edema especially in my feet, legs and hands. I had about 30 pounds of "baby weight" to lose even though my "baby" was 3 so I decided to get rid of it once and for all. Around this time I had an episode where I got bit by something on my neck and developed swollen glands in the back of my head. I felt Fluish-did not have a fever though and I was
achy. I also noticed at this time that my urine was very dark. I had it tested and there was no blood in my urine, but the Dr. I saw said that the color did show up as brown and told me to drink more water. I was already drinking about 8-10 glasses of water a day.

Well, I lost the weight but I still had the swelling in my feet and hands. Everyone was telling my how great it was and how I must have so much energy, but the thing was I was feeling worse than ever.

Now we are up to May of this year. I had been taking Minocin ( a tetracycline antibiotic) every month to help with breakouts. In April and May I got a yeast infection after taking the Minocin so I decided to stop taking it.
Shortly after I stopped I noticed a rash on my lower left leg. Shortly after this I noticed that my vision was off-colors were too bright everything had a glare to it and I felt like my depth perception was off. I started having problems with my memory-short term stuff was just gone. I remember taking muffins out of the oven one morning, walking up the stairs, and then not remebering if I had taken the muffins out. I started to occasionally stutter and have problems finding words. I could not drink any alchohol and I noticed that my breasts started to look like they did when I was nursing, which I though was weird, but maybe a hormone issue. This went on all summer, just kind of vaguely not feeling well until August 17th.

I started the day off feeling nauseated and dizzy which was a constant until about 1:30 in the afternoon when I started having chest pain as I was driving on the freeway. I wasn't concerned, I just thought it was heartburn when all of a sudden I felt like I was going to pass out, tunnel vision and my pulse went way up. I was no where near an off-ramp and was on a major interstate so I called 911. When they got me in the ambulance my BP was 200 over 110 and my pulse was 110. They thought heart attack. I was checked out at the hospital and everything was normal, although they did a chest x-ray that showed my spine and I was told that I had arthritis in my neck and a slight heart murmur. I had never had either of these before. Their final conclusion was that I had had a panic attack. I had another one of these episodes 4 days later at Target with my kids, and another one Driving again 5 days after that, but this time I couldn't think clearly and I felt like I was in a fog. This time they did a CT scan-normal and ran a bunch of bloodwork-all normal. After this these episodes of feeling like I was going to pass out were happening on a daily or every other day basis. I would actually get to the point where I would "see stars" , but I never did pass out. I was afraid to be alone with my boys and I know this was scaring them, especially my older son who is only 7. I had to make sure he knew how to dial 911 in case Mommy passed out.

I thought maybe these were balance issues so I went to an ENT who diagnosed my with Vertigo and something called peripheral vestibular damage. I went through major balance testing to rule out Menieres and went through phsyical therapy to correct the vertigo and vestibular issues. But guess what? I felt no better.

So now we're off the see the neurologist who thinks what I have is status migranosus- a constant migraine that my body can't break and he puts me on steroids. After the steroids, which didn't help I felt worse than ever. MRI's were normal. I wore a holter monitor for my heart which was normal excpet I had these episodes of skipped heartbeats. I looked run down and my skin color was kind of blue'ish especially in my hands and feet and I had a slight Bell's Palsy on the right side of my face which I noticed along with my Husband and a Chiropractor that I went to to see if he could "fix" me. Around this time one of my friends calls to ask me if I have ever been tested for lyme disease. I hadn't so I started to research the symptoms. I was shocked to see that I had almost every single symtpom on these lists. I won't go into them all since I know you all know them inside and out, but I literally had almost every single one and I thought a lot of it was "just me." I hadn't connected it to my recent health problems.

So now I start my lyme odyssey and I am sure you all know this part well. Every test by all traditional labs are negative. Antibiotics which I started are doing really weird things to me, most notably the tremors which started 6 days into to Doxy and come like every four weeks, other things that I never had before abx are the burning sensations in my arms, legs and butt. The night sweat now are worse, I have more episodes of panic which I have never had before. My feet hurt more than ever, but now it is both of them. My right knee hurts and it was always my left before. My bones make cracking noises going up and down stairs. This is all new since the antibiotics and these things come and go. Some things are getting better, but the neurologic symtpoms and vision issues are not. I felt better before I started taking abx and all the drs. I am seeing are telling me it is because since my tests are normal I must have something other than lyme although none of them can tell me what that something is. One I.D. guy told me I needed a psychiatrist and refused to send my blood to Igenex. He told me that Igenex was not a reputable lab and that it just fed in to the "lyme counterculture".

The neurologist does not think this is MS or ALS, I have even asked them to test me numerous times for syphillis since it is also a spriochete that causes herxheimer reactions even though I have never been promiscuous and have been happily married for almost 11 years. This has just been crazy!!

The only test that was abnormal was my EEG. The neurologist said he saw a slowing of the EEG which could possibly be some type of atypical seizure. I hear that word "atypical" with every "diagnosis" that I get. When I told him that I still think this is lyme he said that lyme would explain what he was seeing on my eeg. BUT-because I test negative on all my lyme tests through quest, they would rather treat me as an aytipical seizure, or an aytipical migraine, or an aytipical meniere's patient rather than entertain the idea that this could be lyme.

I have read that the longer you have lyme the more likely that your body stops making antibodies. If my Igenex tests are negative I don't know what else to do. Since what I have at this point would be neuro-lyme only I.V. abx are going to work and noone will give me I.V.s without a diagnosis.

So there you have it. I know this was long and I am sure I even left some out. If anyone has any thoughts I would appreciate it. I don't know if I can travel since I can't drive myself and we have little ones it would be soooo expensive because we would all have to go.

Please Help...

Frango

Roman77 02-01-2006 06:16 PM

Re: It's time to tell my story
 
i am so sorry to hear your story frango. my heart goes out to you. sounds like you have been through the ringer and then some. the whole doctor situation and no diagnosis is an awful place to be in. there's not much i can say other than hang in there and you're in my prayers. your story sounds much like mine and others, lyme is a very long rough road....even to just get a diagnosis, exactly like whre you are at, seems to take forever and it's an uphill battle all the time. i hope that you here back about your lab tests soon and that they are positive so you can start a treatment. i hate to say i hope it's positive but at least then you have some place to start and work your way back to being you again instead of having to delve back into the quagmire of docs and searching again. that alone is so frustrating...to be so sick and have all the docs say it's in your head, and so on. that only makes it worse, and breings a feeling of helplessness that no one should have to ever deal with. one thing i can tell you is that i've had lyme for so long, since i was a kid too and none of my tests including a spinal tap were ever positive for lyme. not until i sent them to ingenex. i sure wish i could help more than this, but try to stay postive and not too worry to much till the chickens hatch by way of that test. i know that's tougher to due than say, but stress isn't good for anyone and worrying doesn't change what the results are. you're in my prayers for a resoultion soon. let us know what you hear. take care. :angel:

shanna

6Blues 02-01-2006 07:16 PM

Re: It's time to tell my story
 
Frango, thanks for sharing your story. I was also examined by many doctors who found nothing wrong with me. I also went in search of an "ear" problem to explain my loss of balance. I saw a nuerologist who told me I had dementia (my personal favorite misdiagnosis :) )

Try to remember that there are no hard and fast rules when dealing with Lyme.

One person may have ten bands on a Western Blot test and not have any symptoms. Another person may have one band and feel awful.

Even with a negative test result, you need to see an LLMD. The rash you had as a child is a big sign. If someone has the bulls-eye rash, they have Lyme. Period.

A doctor familiar with Lyme will help you in many more ways than just prescribing antibiotics. They will help you manage the disease, your treatment, help cope with symptoms, suggest herbal supplements and monitor your liver enzymes among many other things. They are knowledgable and will answer your questions and quell your fears, having more compassion for your suffering than other doctors may have.

An LLMD will use analytical test results AND your symptoms to make a diagnosis.

If you're not seeing an LLMD, I recommend you get one soon. The folks here can help you find one.

You will feel better someday. Lyme disease is curable. It may not seem like it right now, but everything will be OK.

Peace and health to you,
Mickie

deejavu 02-02-2006 05:17 AM

Re: It's time to tell my story
 
Hi Frango,

I am so sorry you have been going through all this. To not know what is causing all your symptoms is the worst feeling in the world. I feel for you.

I know panic attacks very well as I have been suffering from them since I was a little, little girl and even though I am better, I still get days where the panic attacks stop me from doing what I want. Not a good feeling.

Because you are at home with 2 young kids, I am going to suggest that you buy Dr. David Jernigan's book called "Beating Lyme Disease Using Alternative Medicine". I bought my book from ****** and have been following Dr. Jernigan's protocol and have improved tremendously!

I look at it this way, when I first starting using Dr. Jernigan's products, if I didn't feel any difference, I would have stopped. But I felt a gradual difference and now I feel a huge difference!

You have nothing to lose by reading the book and starting on his protocol. I am not promoting Dr. Jernigan and his protocol, it's only a suggestion.

I will be thinking of you,
Denise

battling on 02-02-2006 06:14 AM

Re: It's time to tell my story
 
Frango I've been out of action a few days and now having a spert of energy. so cleaning.
Just want you to know i have seen your thread and will be with you later as i wish to read it with care.

hugs (())
Jules xxx

fotomom 02-02-2006 08:27 AM

Re: It's time to tell my story
 
(((((HUGS)))))

You have been through a lot. Sounds like your not seeing a LLMD since they would be all over testing at Igenex....

Pearlscale 02-02-2006 11:28 AM

Re: It's time to tell my story
 
Frango
Your story sounds familiar. To alot of us.

I have had it for 18 yrs now. Sometimes I wonder if I have been reinfected several times. I was tested. treated 10 days. test came back positive. The doctor told me that I was cured. (I had cardiac involvement then and joints were turning to sponge (doctors words).

I went later that summer and a infectious disease doctor had the nerve to tell me I probably never had it.

From then to now, Rheumatologist 1993 to just last summer when I went to him with a flare up of my problems and he say Fibro - live with it. (my words) late 90's cervical surgery (twice) and this is where the bite sites were. (connection - probably) 2000 MD sent me to neurologist. 2 yrs later that neurologist sent me to 2nd neurologist for possible MS.

I went on my own to LLMD. When I told my family dr about this upcoming appointment, he says and repeats it 3 times "you do not have lyme" (like I didn't hear him the first time. I told him I was going. Best move I ever made.

Please, please go to a LLMD if you are not already seeing one.

Prayers to you.... :angel: .....Marsha

battling on 02-03-2006 03:31 AM

Re: It's time to tell my story
 
Frango
your story is so full of heart ache and i can relate to most of it, mornings when my son was suppossed to be at school i was flaked out in bed.
My LLMD is sure i have had lyme since 7 or 8 an das PS wrote I belive i have been infected quiet a few times but getting some one to belive once is enough..

The phyciatrists are as bad as the phcologistss and the physios ( spelling) are as cutt off as the GP's

I have had broken feet as a child through falls and one this year also.

i felt that the childhood attack passed and lyme was dorment but mentally it dampened who i was.

now this year it has gone mad.
ENT speacialist for TJM, ear tests eye tests, Phyciatrists, chiropracter,
full body testing i dont think an organ has been missed and they all are ok, which is good but sometimes i would just like some proof.

A Neurologist that dismissed me as manic depressive once he knew it was in a family memeber, he closed my file and signed me off 4 minutes into my meeting. but ordered an eeg to cover his but.

both eeg and MRi are clear but now I dont trust them to even bother to look properly.

Eventually through my own searching on the net i found Lyme i was then and still am labeled BP and im given antio Manic tabs that send me violant inside, so no more am i taking thier rubbish.

The only good thing to come out of the phyciatrist is an anxiety management coure which starts next week. Try to use them to get life skills out of them.

I feel they are all playing a stupid game and to play it you have to be very sly also.

Anyone you have that has any contact to anything that can help you.
Life skills, may be not for now but later. Job awarness for people with problems working ( for later)
anything Frango that may aid your life later.
You use them and you take it.

I have resided to teh fact no one wants to know about lyme other than an LLMD which i got in the end thank god.
Although i am seeing storys now on teh net of GP's being more open minded, but if you feel there is a wall try not to jump it if its high as it will drain your energy.
Turn around untill you find one manageable.

Anyone out there in teh proffesion is for me to use.
I will Lie play ignorant as they do and get some help through a different avenue.

I cant say much else regarding your awfull time as i also have not been in Lyme world very long.

Hold on tight, detox and detox and eat well.

My heart goes out to you and your children.

Its not what you want them to grow up with but worrying for it is also going to make you alot worse, may be we all on here can do some worrying for you so you can have a rest xx
I see your young lad there on the phone looking out for mum.
and I imagine him as an adult cool as a cucumber in a crisis, because mum taught him.
I hope that makes sense.

HUGS
Jules xxxx

Betterdaysforme 02-03-2006 06:58 AM

Re: It's time to tell my story
 
Dear Frango,

I told you I would write today so here I am. I think our similarities start out with the fact that I was born and grew up in the Boston area. The town was Ashland but the next town Framingham is better known. Maybe your mother has heard of it. I visit quite often but feel I got lyme while hiking in Bar Harbor, Maine in October of 2000.

I don't remember a tick bite or a rash but I sure have the symptoms. But didn't realize this until 4 years later. I was dealing with a lot of stress but nothing seemed to bother me after getting home from vacation until my husband lost his job and a friend I sat with daily for 8 months died of cancer. We all know what stress does with lyme.

I started out with a sinus infection and then a few weeks later after abx my left hand, left toes, left side of my neck and head went numb. I was sure it was a stroke but happened over 4 days so really knew it wasn't. After the full round of tests the neuro was sure it was MS. There was a mark (shadow) on my cervical MRI but this faded to pencil point size after 3 months but there was no changing his mind. I stayed like this for 18 months with not one change until like you I sought out a chiropractor and when she was working on me we noticed my left elbow kept swelling like an edema. I went to the GP to get naproxen and he talked me into taking valtrex just in case all that was going on might be a virus. This was the worst mistake of my life because it suppressed my immune system just enough for me to lose the vision in my left eye.

The neuro and opthamologist then agreed it was MS and ordered 5 days of solu-medrol IV at 1,000mg. According to the nurse who administered it I should have felt fabulous and gained weight. I did just the opposite. I couldn't even get off the couch. They wouldn't believe that the 2 valtrex I took might have caused a bad reaction. I have since found an article that valtrex on rare ocassions can do this. Meanwhile another MRI was done and nothing showed this time and the neuro was puzzled but the steroids had done their damage. I think this is maybe what happened to you when you took them.

It was a gradual slide that picked up speed. Like you I couldn't even stand long enough to dry my hair or the back of my left knee was killing me. All of a sudden I had floaters and bright lights drove me crazy. The vision in the left eye is okay now but there isn't as much light in what I look at as the right eye. Hard to explain.

I then saw an acupunture doctor who helped a lot and a homeopathic because I was completely discouraged with traditional doctors. I never had the seizures you talk about but wonder if what was on the eeg was really lyme lesions not migraines. I was actually led to believe only MS caused this but have found out lyme can too. I feel for your son having to be so vigilant but am glad you showed him what to do. If nothing else it gave him some control of the situation if something happens.

I tried going natural after an IV of rocephin messed up my liver enzymes but had to switch back to traditional when my husband had a meltdown. I feel I am finally dealing with somebody who knows what's going on. I don't know if IV's are the only thing that will get rid of lyme but Dr. Crist starts out trying his best with orals so I think they can work too. We do drive from Dallas to Missouri to see him. I have to admit this past year with treatment I feel worse but look to a brighter future. If it was MS antibiotics wouldn't make it worse. I do know that.

It is a shame that most of the time doctors want to shove anti-depressants or steroids down our throats because I think they are not for everyone and definitely don't help lyme. I thank God every day I never went on MS meds. Where would I be today. There is hope and this seems to be a never ending road but we will get better if we connect with the right doctor. Preferably an llmd. I hope you can find one that will work with you because that is your future. Don't worry about the bloodwork. If it comes back negative it doesn't mean anything. You are not crazy. I finally had bloodwork sent to Igenex after almost 5 years of crap from doctors and by CDC standards I am still negative with 4 positive and 1 indeterminate band. If it isn't lyme why does the medicine make you so sick if not for the bacteria reacting. There are a lot of little clues like certain bands not the amount of bands and the temps we all have. You need to fight with your every breath because you are your own best advocate. I look forward to a positive test but like JUles hope that even if it isn't you will be treated.

Maureen

PS By the way I am convinced that no matter how good your health is once lyme compromises it there is no turning back until it is treated. I was never sick, was playing soccer at the age of 35 after having 4 kids. I had never been to a homeopathic, chiropractor or acupuncture doctor. My file at my GP's office was very thin.

wackowoman 02-03-2006 01:59 PM

Re: It's time to tell my story
 
Frango,

Just a little thought. My Q-eeg did not come back completely normal and I had a SPECT Scan done. Looked like a near drowning victum (damage from the ammonia).

So, you go after the Lyme, however you decided is best for you (I, like Denise, am using Dr. Jernigan's protocol). But I wish I would have known to have the SPECT scan done earlier and treat the damage. Problem is, sometimes the damage can repair itself as Lyme goes away, for me it did not. So that's why I am just putting this idea here, don't know if it is right for you, just something to keep in the back of your head as you are walking this journey...

Thinking of you.

P.S. If you decide to have a SPECT scan done, be sure you do it at a top notch clinic. Some clinics don't really know how to correctly read these scans.

Sorry for all your pains. Thinking of you,
Jeanne

Smyle 02-03-2006 02:39 PM

Re: It's time to tell my story
 
Hi Jeanne:

I had asked my neurologist about a SPECT scan and he didn't think it was necessary. I think I will ask him again as anything to give more answers would help.

Maureen- Your story does sound very similar to mine. Even the locations. I have relatives in Harpswell, ME and have been to Baaa Haaabaaa! (That was a literary attempt at a new england accent.) :)

Frango

Betterdaysforme 02-03-2006 02:59 PM

Re: It's time to tell my story
 
Dear Frango,

It is so funny that when you go to Bar Harbor it is very easy to start talking like them.

Maureen


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