Lyme Disease Support Group

Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.

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lymie100110 01/05/2009

Well I decided I need a break from antibiotics, since I have seem to have reached a plateau. After a total of 8 1/2 years on them I am just sick and tired of it, not to mention having to remember to take pills 4 times a day, remembering all the interactions and everything else. I am just tired of it all. Now I am getting over a nasty viral infection head, nose, throat, and chest. I am worn down, I am so fatigued but can't sleep and I am depressed from dealing with it all.

I'm 24 years old and have been dealing with Lyme for around 17 years, including one period of remission, for about two years. I'm on disability, for a total of 493 dollars a month(just got a 24 dollar a month raise, thanks you jack arses in congress). I have OCD now because my memory is so bad I HAVE to double check everything I do, sometimes triple check. I had to drop out of high school. I just feel so damned useless. I have 2 more courses for my diploma, and I'm halfway through one of them but I got too sick to do more work on it.

I still have chills, sweats, fevers, muscle pain, joint pain, arthritis, migraines, and a crap load of other problems that I cannot remember until they hit again. I have joint damage in both my knees, some days I can't sleep unless I put on knee braces. That's right, I have to wear knee braces to bed because of the pain from the joints slipping. On my good days I can walk without assistance, on bad days I need to wear a pair of knee braces and try to keep my knees from bending too much, on the worst days I need to use a cane. My knees are always trying to go out from under me when I don't have a knee brace on. To top it off I feel to crappy to see an orthopedist to have them check it out.

Sorry for the long post I just needed to vent a bit.

deleted_user 01/05/2009

Hi Lymie100110, I am so sorry you are going through this. There is no doubt about it, Lyme(and all it's coinfections) suck. It's wonderful that we have a safe place such as this to vent.

Is the Dr you are seeing Lyme Literate?

It is a good idea sometimes to take an Abx break...I tried one for a week and got sick again so couldn't go any longer than that.

When I had stopped improving, my LLMD switched my meds up... have you tried that?

I'll got to your profile and read a bit, just wanted you to know that you are in my thoughts and prayers.

Many hugs

deleted_user 01/05/2009

Hi Scott,

I am so sorry to read this, and so angry that a young man of your age can be robbed of his future health and career.
I don't blame you for giving up on the antibiotics, its crazy that you don't get better after all that time.
Have you tried raw Garlic, which is a good natural antibiotics and organic flax seed oil in milk this is very healing too. I posted some healing foods a while back which could be of use perhaps.
Good luck I hope things improve for you
Dave :)

slrow 01/06/2009

I feel your pain. Myself has been on antibiotics for years also. It is depressing and nobody knows how you feel except if you have been there, I am 38 and have had it since birth probably. Have given it to my daughter that way and get so frustrated at her when she won't take her meds. I ask her do you want to end up like me. I lost my job due to it and it rules my life.
I do know that diet plays a big role. Sugar and bad carbs a no-no. Lots of vitamins to help with things. I know too that i am so tired of taking pills. I threw my bottles in one fit of rage and pills went everywhere. My husband looked at me like that was real good genius. Then I had to laugh. Try Sam-E 400mg up to 3 pills a day if you can. It is expensive I find it hard to afford but it has helped with my depression. Best of luck and I am here if you ever need to talk!
LOL & Big Hugs

deleted_user 01/07/2009

I agree with taking vitamins' minerals and herbs. A GOOD multivitamin and mineral supplement can do wonders. Heavy emphasis on good because there are a lot of products out there that don't perform for a number of reasons. There are good products out there. You just have to do your due diligence to find them.

Also, Ponder44 seems to have a wealth of knowledge.

lymie100110 01/12/2009

Well it's update time, and not good news. Looks like my gall bladder is failing, and the next time I have a bad flare up I am supposed to go to the ER. Friday night started off all right, but came a hairs width of me ending up in the ER. The symptoms were nausea, light headed, dizzy, chest pain, fever, sweats, chills and such. I took my BP and it was 183/105 with a pulse of 95. The following night was almost as bad, 138/53 with a pulse of 88 in the beginning, the blood pressure cuff became uncooperative so I couldn't get more measurements. I've had the flare ups before, but never this severe. To make a comparison, the previous were like being run over by a cargo van, this episode was like being run over by an 18 wheeler hauling a tank. I'm hoping that if I go to the ER, not only that they can treat the symptoms, but maybe I can get some blood drawn for a microscopic examination, to see if we can't find the causative agent when it's active. I cannot remember a time of being more frustrated, down trodden, and fed up then I am right now.

deleted_user 01/13/2009

lymie100110, sorry to hear you have been on therapy for so long. I just finished year # 3 and I too was born with LD. Gave infection to my daughter and she got MS from it and my granddaughter has JRA. She is now pregant and I hope this awful disease will stop before it goes into a 5th generation!!! Keep us all posted and I will on my family too. I went off almost all my drugs for a while JUST BECAUSE! I get so tired of taking so many RX. Of course I take antidepressants AGAIN, and heart med and meds for RA.......yadayadayada..... praying for you pastorpegi

deleted_user 01/13/2009

I lost my Gall Bladder a year ago. I was scheduled to have it out but a week before surgery I had an episode and had pancreatitis and it blocked all of the tubes from pancreas and gall bladder and such. so what was to be an out patient procedure turned into a week in the hospital with no food or water (not allowed to swallow anything orally that might stimulate digestion) and 2 procedures and MRI and and and...

But it has been a year and I am fine without now.

No one will say what caused it but I believe it was lyme.
(lost appendix 4 years ago that i think was lyme related too)

deleted_user 01/14/2009

I really relate to this posting. I have been taking anti-b's for over 10 years pretty much without a break and have been sick with lyme for 18+. Everyone posint this site is suffering so much and keeping brave fronts to the world. I lost my Gall bladder the first time I had IV Rocephne (in the very begining). Apparently it was common for this to happen as the Dr.'s all said so, even 15 plus years ago. I too feel I have tried everything and now I will try to use only the herbals for as long as I can stand it. I am somewhat glued together and only have pain sometimes when I forget to take my Cymbalta. For some reason that is helping me with many if not all the pain issues. But nothing seem to help with fatigue. If I push it I can crash. Try to get your Gall bladder out while it is still small enough to do laprascopiclly. You will have a much easier time of it. And if it is going bad it could be contibuting to symptoms you might think are lyme. Like sweats and fevers and nausia. Good luck

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