posted
Hello, I am a 32 year old female from Illinois. I was recently told that we do not currently have any Lyme doctors in my area. I will tell you my story and hope someone here can help me. I have been to several doctors/nureologist etc. I was tested for everything all negative including Lyme but I have researched and found that I can still have lyme and be negative. I was found to have a positive ANA which I am told is common in women without regular cycles. My white blood count was just over normal on the high side. This all started a year ago while we were boating at the river in Missouri. I had a bite on my stomach while we were camping. I got the rash on my stomach that then spread all over my body and itched terribly. It was like hives all over but that circle one on my stomach was there the longest. I started with back pain- then pain in my fingers - I thought I was getting carpel tunnel..the finger pain has since went away. I got a fever, chills, body ache about a week or so after that. Then the rash-hives started again for about another week after they had gone away. My knees started to hurt from there-I had a hard time going up and down stairs- crippiling pain in them. I started taking an iron pill and that seems to help me some- I thought I was anemic possibly. My doctor all this time is telling me I had an allergic reaction to something. My left eye lower lid started to droop- I took a nap and after several hours it went away and did come back again a few days later for a few minutes. I now have terrible swelling in my ankles and feet/toes. Very painful. My body aches all the time- one day I am ok- I can tolerate it and the next day after I get off of work that is it- I am in bed the rest of the day. My eyelashes seem to be coming out more than normal lately....My hair is thinner....I had chest pain early on that felt like I was having a heart attack- doctor said it was hives internally from the allergic reaction. In addition to the swelling leg/feet the last 2 months I am getting headaches when out in the sun or reading for any long period of time. I have a lack of concentration that is unusual for me- mood swings-I am irritable and not my normal self all around. I ache all the time- joint pain..my arms are starting to ache from time to time and tingle, I get dizzy when driving or reading..and since last year I have gained alot of weight and do not eat anymore than I ever did. I am tired of my doctor blowing it off and offering me depression meds- I am not depressed. I am getting upset however on the constant overlooking of my pain/symptoms. He said "a negative test is a negative test period!" I have reseached LYME and found that to not even be close to a fact. I was never sick until that happened to me. My life is not the same- I can't do physically what I could a little over a year ago. I can't sleep well anymore- I am always tired even after just waking up. I can sleep an entire day away. I am desperate for help. If anyone can steer me in the right direction towards treatment, I would truly appreciate it.
Thank you, Monica
Posts: 2 | From auburn, illinois | Registered: Aug 2007
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kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
You may have to travel, but put in a request for Seeking a Doctor. Find a Lyme Literate Doctor soon!
bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Monica,
I took the liberty of adding spaces so I can read your post more easily.
Posted By Monica:
"Hello, I am a 32 year old female from Illinois.
I was recently told that we do not currently have any Lyme doctors in my area. I will tell you my story and hope someone here can help me.
I have been to several doctors/nureologist etc.
I was tested for everything all negative including Lyme but I have researched and found that I can still have lyme and be negative.
I was found to have a positive ANA which I am told is common in women without regular cycles.
My white blood count was just over normal on the high side.
This all started a year ago while we were boating at the river in Missouri.
I had a bite on my stomach while we were camping. I got the rash on my stomach that then spread all over my body and itched terribly.
It was like hives all over but that circle one on my stomach was there the longest.
I started with back pain- then pain in my fingers - I thought I was getting carpel tunnel..the finger pain has since went away.
I got a fever, chills, body ache about a week or so after that.
Then the rash-hives started again for about another week after they had gone away.
My knees started to hurt from there-I had a hard time going up and down stairs- crippiling pain in them.
I started taking an iron pill and that seems to help me some- I thought I was anemic possibly.
My doctor all this time is telling me I had an allergic reaction to something.
My left eye lower lid started to droop- I took a nap and after several hours it went away and did come back again a few days later for a few minutes.
I now have terrible swelling in my ankles and feet/toes. Very painful.
My body aches all the time- one day I am ok- I can tolerate it and the next day after I get off of work that is it- I am in bed the rest of the day.
My eyelashes seem to be coming out more than normal lately....My hair is thinner....I had chest pain early on that felt like I was having a
heart attack- doctor said it was hives internally from the allergic reaction.
In addition to the swelling leg/feet the last 2 months I am getting headaches when out in the sun or reading for any long period of time.
I have a lack of concentration that is unusual for me- mood swings-I am irritable and not my normal self all around.
I ache all the time- joint pain..my arms are starting to ache from time to time and tingle, I get dizzy when driving or reading..and since last
year I have gained alot of weight and do not eat anymore than I ever did.
I am tired of my doctor blowing it off and offering me depression meds- I am not depressed. I am getting upset however on the constant overlooking of my pain/symptoms.
He said "a negative test is a negative test period!" I have reseached LYME and found that to not even be close to a fact.
I was never sick until that happened to me. My life is not the same- I can't do physically what I could a little over a year ago.
I can't sleep well anymore- I am always tired even after just waking up.
I can sleep an entire day away. I am desperate for help.
If anyone can steer me in the right direction towards treatment, I would truly appreciate it.
Thank you, Monica"
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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posted
You got bitten by a tick, had a rash, developed all these problems afterwards and your doctor is calling it an allergic reaction? Patethic, Lyme is supposed to be a clinical diagnosis.
Your symptoms remind me of my own...brushing of all the knee issues etc., until the neuro symptoms started. You need to find a LLMD and get treated, it won't go away otherwise. Also get a doctor to test you at Igenex labs.
-------------------- Why me? Well, why not me??? Posts: 411 | From San Francisco, CA | Registered: Mar 2007
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
It sure sounds like lyme to me! Have you had a test done by IGeneX? They are the most reliable lab.
If your doctor won't do it, then you can order a test kit by calling IGeneX, and take it to another physician, or someone who will draw blood for you.
You may be able to find an ND (naturopathic physician) in your area who would draw blood, if your physicians won't do it for this test.
I am being treated by the alternative route with help from a naturopath according to the Buhner and Dr. K protocols because we have no LLMD's within traveling distance for me.
An LLMD (lyme literate medical doctor) will treat you based on symptoms, even if your tests are negative.
I understand from many people on this forum that it is worth every penny to travel out of state to get to a good LLMD.
I also know from personal experience and from many others that trying to convince a local doctor who is not lyme literate to provide adequate treatment is not worth money or effort!
Good luck! You've come to the right place! You are on your way towards getting the help you need and getting better!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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I am sorry to hear about your medical problems you have been having. Your story sounds like a classis case of Lyme disease. You are right, many people with Lyme disease test negative.
You need to find a lyme literate medical doctor asap so you can get the proper tests done. Ticks that carry lyme disease also carry many coinfections so you need to be tested for them as well.
You said there are not any Lyme doctors in your area, i am sorry to hear that. many people travel long distances to see a doctor and get proper medical care.
Good luck, Lindsay
-------------------- "One day at a time"
Current: -1.2 IM bicillin three times a week -1.25 IV Vancomycin every day -IV glutathione and IM B12 -Byron White since Jan. 2011 -ALA, Yasko protocal, Adapten-All, thyrosol, Pekano, phosphalipid exchange, probiotics, oregano... Posts: 390 | From FLORIDA | Registered: Jun 2007
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Monica, Please go to the seeking doctors section on this site and ask for a recommendation to an ILADS LLMD.
Seronegative lyme is a fact!! I doubt your doctor ran a test at an appropriate lab anyway since most doctors don't have a clue about where to get the most accurate tests. As others have said, there are other tests that should be run for co-infections too. In addition, you may need to be on antibiotics for a short time in order to get the antibodies to show up. An LLMD will know what to do.
Glad you are here now rather than decades after infection like so many of us.
There is no guarantee that this is lyme or another infection but I will be surprised if it isn't.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
I am so sorry to hear you are going through this and there is no doctor around to help. I hope you can find a womderful doctor and treatment goes well for you!
I wish you the best of luck and the best of health! I will keep you in my prayers.
I too am from Illinois. I'm fortunate in that I was able to locate a Lyme doctor only a couple of hours from my home.
Dr. M has a practice in Sikeston, Mo. and is well known for his research regarding STARI as well as Lyme.
I understand that there is a physician at Washington University in St. Louis who is now treating tick-related illnesses but I don't know his name.
I've experienced and still have many of the same symptoms you've mentioned with the exception of the rashes.
I'm currently entering my 7th month of oral antibiotic treatment and have seen little improvement so far. I'm not certain that I remember what a normal day is like but I'm still working.
I'm confident that Dr. M will get this under control soon.
Dr. M had been very ill but he returned to his practice in late July. Though he only maintains office hours on a part-time basis, he assured us that he has no immediate intentions of retiring as he enjoys his work too much!
He is also very active in writing and publishing his research. STARI, also known as Master's Disease is of particular interest to him.
During my first visit to Dr. M, he asked if I would be willing to allow him to draw additional blood samples for his research. He stated that many of his colleagues ask him for specimens to test newer drug protocols against.
Posts: 6 | From Illinios | Registered: Jul 2007
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posted
I too tested negative for lyme. 8 times negative with regular docs telling me it's not lyme even though I never had health issues until after I found a tick on me. I found a llmd and tested positive through Igenex. If I would have been diagnosed earlier I might be better now. Take the advice the others have given. I did and if I didn't I don't know where I'd be.
Good luck, Rich
Posts: 413 | From nj | Registered: Nov 2005
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