I have been reading this board for a few months now and cannot believe how supportive everyone is! What a great community.
Anyway, I am going to try to make my story as short as possible, but it will be hard. It all started almost 2 years ago in August 2004.
I was just finishing up an off broadway play I was doing in NYC...and having a very stressful time and couldn't wait for it to be over. woke up one day toward the end of August and noticed I had a huge red welt on my left arm near my elbow. Not a true bullseye though.
It did not itch and it looked a tiny bit blistery in the middle but I could not find any tick. My boyfriend and I assumed it was a spider bite and I tried not to think about it even though it kept getting a bit bigger and redder and painful.
I had it for about 10 days-2 weeks. I remember about a week after getting it I felt like I was coming down with something...feeling a little achey and throaty but it went away after a couple of days. Since my play director got the flu that week I didn't think it was strange.
Just as the play was finishing up (end Aug./beg Sept.) My neck and shoulders started hurting so bad it was UNREAL. I could barely turn my head for almost a month. Now, I have had bouts in the past with serious neck and back pain so again, I tried not to worry.
But things that usually helped me in the past like chiro. and massage did nothing to alleviate this. I thought maybe I had hurt myself at the gym...but it was SO severe. Also I kept noticing these little black specks that would show up in my field of vision after exercising...only in one eye. They would be gone in a few hours.
In October the pain let up a little bit but was getting such terrible headaches and blurry vision...especially blurry upon waking up...sometimes blurry only in one eye. I went to an opthalmologist and everything was perfect there.
Then the worst...I had this HORRENDOUS headache during the baseball playoffs in October and I woke up the next day and I noticed my whole visual field was covered in darting specks and tv static...ESPECIALLY when looking at the sky or white or pale plain walls....I was SO freaked!!!
VERY long story shorter...I had 2 MRIs of the brain=NORMAL. All blood work=NORMAL. 3 more eye docs including neuro-op=everything NORMAL. The only thing that showed anything was a dmsa challenge I did with a naturopath for metals in which I had extremely elevated levels of lead and mercury.
Also recent blood work shows that my DHEA is ridiculously low as well as progesterone.
I found out that I had gotten severe lead fume exposure that year form my fireplace...the bricke in the inside had been painted with highly toxic lead paint and the landlord told us the fireplace was safe to use so....boo hoo there. That was a law suit.
Had all of my mercury amalgams removed SAFELY and did some rounds of dmsa chelation...many of the strange symptoms had dissappeared, like the sudden "carpal tunnel" in both wrists, burning ankles...but I am still a mess to this day...worse.
I have such brain fog and anxiety I can barely think straight. I can no longer work out as I feel so weak and dizzy...heart palpitations, symptoms of hypoglycemia at least everyday...sometimes all day. Strange new things that come and go all of the time only to be gone for a month or so and reappear with something new and scary.
I had 2 lyme tests done last year...quest elisa and western blot...both neg. so of course ducks want to put me on anti-deps which i have refused to this day. I have been to so many practitioners to no avail...cannot trust anyone...and I went to a reputable alternative medicine clinic called Schachter center for Complementary medicine.
I had a good experience there and I wanted to do Igenex...but since am so broke the doc said to do a test course of Doxy for 30 days to see if i react...he said I could spend all the money for igenex and it STILL could come back false neg.
So, I left a lot out, but this is the crux of where I am at now. I cannot control my emotions at all and all I do is cry as I cannot function at all like I used to and I am so scared. My vision problems I woke up with that day have NEVER gone away...not even for a second.
Any thoughts on my situation? Thank you in advance for any input!!!!
Kind regards, Heidi
Posts: 36 | From new york | Registered: Jul 2006
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posted
Heidi, I'm sorry you are going through all this.
It's great that you have found a doctor who is willing to treat you with Doxy based on clinical diagnosis. What dose is he going to treat you with?
I would still suggest getting the Igenex test. I was negative with a number of other tests but positive on the Igenex.
This is useful for many reasons: You may be in the minority and not notice an improvement or woreseing of symptoms (herxheimer) with the Doxy. The doctor may be only willing to treat for a short period of time, and that would not be sufficient in your case. A positive Igenex might help you in gettng long term treatment.
The other thing you need to do is find a Lyme Literate Doctor, who will be knoweldable about the complications and nuances of treament of lyme. Go over to seeking doctor section and ask for a doctor in your area.
I know this is expensive, but it is your life. The longer you wait, the more expensive it will be.
Posts: 628 | From the south | Registered: Dec 2005
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Have you taken the doxy yet?I can only say that for me having had longstanding illness I started doxy and within 3 days I began the herx process so I knew I was on the right track.Im not a doctor but if it were me I would do the doxy until I could find a LLMD.Hopefully it will get you up and going at least enough to be employed.I dont know how old you are but im the mother of 4 boys all in college and if I were your parents I would want to lend a hand.
More will be along soon to give you some other ideas.Take Care,RG
Posts: 140 | From Texas | Registered: May 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I would make an appt with a llmd asap. If you have lyme and or coinfections they are going to be your best bet at regaining your health.
If you don't have lyme well they can diagnosis that to. I cant tell you what to do but If it was me I would take the doxy the dr prescribed while I was waiting to see a llmd.
(and I hope you have been warned to be careful with the sun - you can get burnt easily - and badly burnt)
The dr. was right that although igenex is a better lab you could still have it and test negative.
You can go to the seeking a dr. section and people will help you find a llmd. Please make sure your pm is working because info will be sent through pm.
posted
wow its not even funny how much your story relates to mine. I did everything you did including mri catscan and all the bloodwork and nothign came back positive. I too one morning a couple of years ago woke up and had this weird static vision with thousands of little specticles and stars just shooting out all over the place but only when i look up at a clear sky ive been to 10 diferent types of doctors all saying im perfectly fine and was also sent to a psychiatrist who put me on antidepressants and antipsychotics beacasue of the visual symptoms im only 21 years old and feel extremely tired and in a complete fog mentally all day long but i had several tests done with igenex which all came back positive by their criteria. Currently im taking bicillin injections twice a week and flagyl and i think im getting better cant really tell. I wasnt even sure i had lyme disease because i used to live on staten island and i never heard of anyone getting it there well anyways if you want to talk more private message me.
Garry
Posts: 41 | From new jersey | Registered: Apr 2006
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posted
Heidi, Your symptoms sound very much like my symptoms. I did have positive Lyme test from Igenex after 3 negatives using other tests.
You need to see an LLMD.I am getting better after 1 1/2 years on antibiotics, but I was undiagnosed for 13 years. Hope you can find a good Dr. to help you. Hugs, Cindy
-------------------- Cindy Posts: 227 | From VA | Registered: Sep 2005
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Radiogirl: I am 32 and I am actually working right now but it is extremely hard to get through the day...WORKING OUT is what I cannot do at all.
I wish I could ask my parents for help but that's a whole 'nother situation. I think that I am going to do the Igenex anyway....so should I wait to take doxy before the test?? I imagine so.
wow...so other people have these visual symptoms with lyme?? They drive me crazier than anything...along with the loss of equilibrium...
Anyone else experience horrendous bouts of balance issues and lightheadness all day??? I have had this now for a month!! AAAAAAAHH
I want to take doxy but I am so unbelievably scared to feel worse than I feel...I am such a panic...but I know I have to get worse to get better...I am so not a western med type of girl.
I really would love to try buhner protocol and salt c stuff....so confused right now but thank you all for the support!!!
Heidi
Posts: 36 | From new york | Registered: Jul 2006
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Heidi, take the doxy. Prolonging the inevitable will only make it worse. You're still in a relatively early stage so abx should really help.
I would not go the alternative route at this juncture. I'd try a few days of 200mg of doxy p-day and see your reaction, if you herx, you know your on the right course. 400-600mg p-day is recommended but I'd start slow and see your reaction first.
Waiting only allows the Bb to spread and the herxing will be worse. This is your life and future if you have lyme. Your symptoms are one's commonly shared by many here. Keep us posted.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Hubby also saw Dr S at the S Center. We really liked him. His specialty is cancer. He knew hubby was sick, but at the time Lyme was not thought of. He sent hubby to a neuro in Nyack -- the author of Balance Your Brain, Balance Your Life -- stay away from this neuro.
Dr S was really trying to help. The neuro did not do the test the doc asked him to do -- a QEEG (a specialized EEG) -- later got this done in Florida and was the first test that actually showed functional brain problems -- meaning hubby was not just anxious and depressed and that was the cause of his Parkinsonian tremors.
Anyway, when the neuro only made things worse -- myoclonus started after 1st dose of a psychotropic med -- Dr S advised us to keep previously scheduled appointment with an environmental toxicologist in Charleston, SC.
At the time we saw him, Dr S had another physician in his office who was also trained in chinese herbs. If you want to combine the Buhner protocol with antibiotics I think Dr S would work with you. You might want to try the ION cleanse footbaths sometime when you start herxing -- may help with detox.
As hubby did not know he had Lyme at the time, I don't know the doc's philosophy regarding treatment. The easiest thing to do is to print off Dr B's 2005 guidelines and ask the doc if he would be willing to follow them. This doc uses some pretty unorthodox treatments for cancer, so I think he would be open-minded regarding Lyme treatment, but I could be wrong knowing how New York harrasses Lyme docs.
If you go back to the doc, tell him that Steve Seibert says hi. He might remember the guy from Virginia who he thought was going to shake himself to death -- hubby saw Dr S in the Spring of 2001. Was finally diagnosed in Summer of 2002 with Lyme and in Fall of 2004 with Babesia and Bartonella as well.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi Heidi
I figured out I have Lyme by watching a TV program(60 Minutes) about a Broadway dancer who became Very sick -Quickly--
Her symptoms matched me Exactly-- She had Lyme-- Me too --
She was Lucky and was treated soon after infection so she is OK now --
I was not so Lucky and had to go threw 20 yrs of Horriable nonstop pain-- before I figured out what was wrong-
Heidi - from the symptoms you stated you SURE sound like you have early lyme and or co infections symptoms-(Babs)
Let me tell you that Lyme gets Much worse threw time-- you do not want to go there--
I would Sure take Doxy if you have some- its perty effective but for Best effectit has to be taken in a higher dose- -400-600mg aday--
Dont be scaired of ABX --No Reason--
You dock is right about Tests being worthless-- Mine came back-- IND --
I have Zero doubt that I have Lyme and Babs-
20 yrs ago I had a perfect Bullseye bruse on the back of my leg weeks before I started getting sick- I thought it was a spider bite too -Ouch-
Now after about 14 months of Good treatment I am Doing Perty Good--
Regular doctors are useless for treating these diseases-- Dont waste time with them Find a LLMD--
Lots of good help on LN - you are Lucky you found it fairly early--Jay--
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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