posted
Hello, I am 38 and have had Lyme disease for 5 years. I have been treated with oral antibiotics several times and IV doxycycline once.
On August 18th 2005 at 6:00pm is when I felt the disease take hold of my body. I was walking through a store and all of a sudden had to sit down.
By the time I got home 30 minutes later my temp. was 102 and My head and neck hurt so bad I could not bear to move.
I was admitted to the hospital to check for an infection in a newly implanted hip I had done in Feb. 2005, which came back negative. and I was diagnosed with the flu and sent home.
After about a week I began developing a circular rash on the back of my left thigh. The circles then began covering my entire body including my face. I was covered with intersecting circles.
I called my Dr. and that is when I was told "Oh yeah the Lyme titer they did in the hospital was positive, you have Lyme disease". Not sure if I ever would have known if I didn't call to report the rash.
I was put on oral doxy for 10 days. Then when symptoms persisted I saw ID who put me on a longer course of doxy and zithromax.
Fast forward about 4.5 years to now and I have developed severe neurologic symptoms.I have spells which look like seizures but I have been assured by MANY neurologists they are not.
They start with exhaustion,and increased heart rate, then 1-2 mins. later My eye muscles tighten and pull my eyes upward,My left face,arm,throat,and leg go numb and cold. I can hear people talking but am unable to speak, swallow or move.My B/P has been measured during and was 200/110, with a HR 110.
They last for seconds to a minute, and may occur several in a row. After I feel so exhausted, my speech remains very slow and difficult to understand, and my walking is slow and uncoordinated.
These have been happening for about 3.5 years now and I have been told they are "psuedoseizures" brought on by anxiety and emotional distress. NOT lyme disease.
I know there is neurologic damage happening to my body that the Drs are missing. I am afraid I will have a stroke if I don't get treatment soon because they are getting more severe, and the weakness is lasting longer each time.
Has anyone else had similiar symptoms? I know I am not crazy. I just need to find a Dr. who will believe it too. Does anyone have any effective treatment ideas for this symptomology?
Posts: 22 | From maine | Registered: Jan 2010
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
So sorry to hear that you have been suffering from untreated lyme disease.
Unfortunately, severe neurological symptoms have been experienced by many of us, you are not alone. You are not crazy.
First, you need to find a great lyme literate doctor. You should read Dr. B's treatment guidelines. You need a doctor who is going to take your treatment seriously.
There are many people who have recovered from severe symptoms from untreated lyme. Sometimes it takes months of I.V. antibiotics, like rocephin. With severe symptoms you might also have co-infections like babesia or bartonella.
Have you found a good lyme literate doctor? Clearly, the courses of oral antibiotics that you took were not long enough to knock out the disease.
Best wishes for your recovery and start of effective treatment.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Please go to Seeking a Doctor and ask for a dr in your area!!
You need to be seen by a lyme specialist ASAP and get treatment!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I had all those circle rashes, too.
I have seizures, too. And also told by several neurologists that they are just "psuedoseizures" brought on by anxiety and emotional distress.
Inner ear is a huge cause of these. You do not mention hyperacusis (sound sensitivity) or startles from sounds - so yours may be lyme, of course, but ALSO adrenal exhaustion can cause seizures.
Toxicity can, too.
I'm toast right now but will be back with what has helped me.
First, what is your liver support? Adrenal support?
Do you have ANY kinds of inner/middle ear or balance issues?
Are you sound &/or light sensitive?
Sensitive to chemicals?
My guess is yes to all the questions. But, bottom line, you need an ILADS-educated LLMD or LLND who is aggressive and up to date with the best choices as well as the supplemental support methods.
As TuTu suggests, you can post in "Seeking Doctor" and get some names. Also check out your local support group for all kinds of guidance.
In the meantime, MAGNESIUM and FISH OIL are vital.
I'll be back over the course of the day with some good links, but it's most important to first find a good LLMD.
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I agree with the others. It's likely to be Lyme related since you are having symptoms known to happen with Lyme and you know you've had exposure to Lyme Disease.
Most ID docs won't treat you long enough. Many of us require years of treatment to get better rather than weeks.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
That is terrible! You need to get to an LLMD pronto. Buy the book Cure Unknown. There are so many people that have been horribly sick like you are, were told it was something else (or all in their heads) and it was lyme. You cannot cure it in a short course of abx. I am sorry that you have been suffering all this time but you can get well. Best of luck.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sadly yes. Docs are not being told borrelia can
become latent. Please seek doctor over in seeking a
LLMD in your area.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
I'm here. I have been researching ways to get treated without having any insurance and no money. I found a clinical trial for chronic inflammatory demyelinating polyneuropathy. The symptoms match mine closely. What do you think is being a guinea pig better than just letting the disease run rampant? For you Lymetoo..I have not had any relationship between my "seizures" and my inner ear. My neurologist sent me to an ENT for extensive testing and of course they came up with NOTHING! Thanks to all for the support. It feels good to know I am not alone.
Posts: 22 | From maine | Registered: Jan 2010
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quote:Originally posted by nurse lymy: For you Lymetoo..I have not had any relationship between my "seizures" and my inner ear.
??
I would not recommend being a guinea pig for the study because they may use steroids or other immune suppressing drugs which could make the Lyme go deeper. It would be harder to recover from.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I've had anxiety attacks but not seizures, but my daughter has had something similar to yours: she had uncontrollable jaw spasms where she could not speak or move her mouth afterward. She hasn't been positively diagnosed with Lyme yet, but she has many of the symptoms so I am trying my Rife machine on her since I'm having great success with that. She has had a lot of sinus/ear infections, so, coincidentally or not, she's been on antibiotics for awhile now despite the negative Lyme diagnosis.
Posts: 39 | From Colorado | Registered: Dec 2009
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
There is evidence that high-dose (oral) amoxicillin crosses the blood-brain barrier sufficiently to treat neuro-lyme. That can be a relatively cheap form of treatment, certainly less expensive than IV or many other oral antibiotics.
When taking high-dose oral amoxicillin, you need to take alot of daily probiotics and also be careful to follow a diet that will not encourage yeast. I took this with the Buhner herbs andrographis and resveratrol, and it helped alot. Hope you can find a doctor to work with. Best wishes.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Unfortunately that is not a treatment option for me since I am allergic to cillins..although the allergic reaction will probably not be as bad as continuing to live with Lyme, but my Dr. will not try it. Thanks for the suggestion though
Posts: 22 | From maine | Registered: Jan 2010
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posted
Nellie, I hope your daughter gets better soon. Please tell her she is not alone. It is a very scary feeling to have your body lock up on you. Keep taking the antibiotics as long as she can.
Posts: 22 | From maine | Registered: Jan 2010
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