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11/19/2008 09:57
EAFJS
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After all this time; I was tested again and indeed my results for lyme were positive; it has been an ongoing battle; I do have a few questions for any one that can shed some light..... I feel extreme chills for several hours followed by seizure like symptoms.... I feel my blood flowing down the back of my head, chest and arms like my blood is ice cold and then extremely painful muscle contractions and stiffness in my neck arms and chest; I can not do anything to control it or prevent it...just wait until it passes.. the next day I feel very weak in the arms and the legs... Does any one experience this? Also can lyme be passed to a spouse who has not been bitten by a tick?

Any info will be greatly appreciated; as I am currently very confused and discouraged.

Thanks

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11/19/2008 12:09
cmany
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Hi...

I have had very similar symptoms...neurological...and it is very frightening. Some of what you describe (the cold blood feeling) is what I have with the neuropathy in my spine...and when it comes, ya just have to ride it out. Man does it suck - so you are not alone.

I have also in the past had a type of seizure where my body would basically just freeze. I could see and hear but was totally unable to move...then would have mild jitters upon coming out of it...it was scary and only lasted for a short time...

As far as passing to a spouse - the answer is still up in the air on that one. I believe it can - I have known people who swear that it happened to them. And there is evidence that points to both yes and no. Such a typical Lyme thing - it depends on where it is in your body basically. I tell people to take actions as you would with herpes...If you suspect - then get tested - but remember that there are no certainties with the tests either...

If you are seeing an LLMD - which you should be for best results, discuss it with them too...

But hang in there. it is tough and can be a really horrible experience, but you arent alone. You have come here to a really good place, we have tons of great people with really great info - compassionate ears - and even a little bit of humor...

Always feel free to PM if you need anything = even to vent - I never take it personal

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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11/19/2008 15:09
jaime1978
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Hi there. Are you seeing a LLMD? If you need help finding one, please pm me or one of the other group leaders, we'll be happy to help you.

Neuro symptoms are common with lyme, unfortuatly. They can be quite scary. You definitly want to start treatment asap.

as far as passing it to a partner, as Christine said, it's up in the air. Some studies say yes, others say no. If you are concerned about it, definitly take precausions, and if you feel it's already happend, you should both be tested and treated if necissary. Some people/docs say that families are usually in the same areas together, and likely all infected together.

When you consider that lyme can be transmitted thru ticks, mosquiotos, and fleas, it doesn't seem to far fetched that pretty much everyone has probly been bit at one time or another.

Please do not take anything I say as medical advice. I am not a doctor.

~lyme disease support group leader~
please pm me with any special concerns
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12/08/2008 13:30
EAFJS
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I have been seeing an LLMD in Alabama since june or july;he was refered to me through chatting here; I have seen improvement in some areas; but I have developed some horrible new symptoms as well;we have been on a trial and error as far as antibiotics go; as far as detoxing I have been doing the massages(very painful) and saunas; I also purchased green algae; and a number of mineral supplements and vitamins also bathing with peroxide. Are you or any one else able to share any ideas on detoxing? ..... Yes I do agree with you... there are alot of great and helpful people here; if it was not for everyone here; I would still be visiting several different doctors and continued to be treated for misdiagnosed diseases.

Again... I am greatful for everyone that has helped; Thanks

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12/08/2008 13:50
cmany
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EA -

You may just have a really tough case. I have never had a full remission, and everytime I had a huge crash I developed new and worse things. As it was put in my records, I have an unspecified CNS disorder (which has become neuropathy), unspecified brain disorder...and each came with some pretty hefty symptoms - ALL while being under treatment. There were times when my LLMDs were a bit perplexed...So hang in and keep fighting.

Are you drinking enough water? Plain water half your weight in ounces daily will help to balance you out and help with detox...but you should look into some good detox teas, and regimines...check with a good health food store...there is something else that is on the tip of my thoughts - but sorry I just cant seem to grab it right now.

Christine

I know what I am and I know what I am not

Never put it past this disease to be the culprit - but we also cant brainwash ourselves into believing that it is the only thing

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12/08/2008 14:09
fluffyluggage
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I'm with cmany and Jaime on this one. It's rough. I feel you, I've been there. The chills are rough, and they can feel like seizures sometimes, they are so bad. I am on a natural protocol, I chose it myself, through a lot of research, and not with the help of a doctor. I'm very tired and suffering from a Herx, so not much use at the moment, but if you want to ever talk, please feel free to PM me, I'm usually around. Also, if you want to know what I'm doing, other than the Herx, I've really been improving...I know it doesn't sound like it, but I'm just having a rough spot. The last one lasted only 2 or 3 days, so I expect to be feeling really well in a few days! Hope you can find something to help really soon. And my own protocol has helped so many things for me, within just about 9 weeks I'm feeling so much better (just ignore this little episode--I expect setbacks every now and then! LOL)

*hugs*

Jen

Just because it's impossible doesn't mean it can't happen.

I'm not a doc, so anything I say is my opinion only. Nothing I say is meant as offense, I offer what I can as help.

I believe in educating myself on all my medical issues and being my own advocate, for no one else with do that on my behalf. I recommend we all do the same!

The definition of insanity is doing the same thing over and over again and expecting different results. Perhaps I truly am insane for expecting these docs to listen to me when I say the same things repeatedly to no avail? LOL. I am tired of seeking out new docs and getting the same result time and again...Forgive me if I seem bitter some days.

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12/08/2008 14:46
Julie4848
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So sorry you are not feeling better...I agree drink as much water as you can...I am a hugh water drinker so I do drink around 8-9 8oz glasses a day...

I think I am having a set back the past few days, but I know then to take it easy if I can...I have been out of work for 5 months and I have a temp job starting tomorrow for the next two weeks, wish I did not have to do it when you feel like crap...But oh well have to...

I also take detox baths twice a day with epsom salt with lavender (lavender is for calming me) I do believe they help with the pain...

I wish you the best of luck in your recovery

Julie

Lyme will not win, we will and we WILL…

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