going down hill, don't know what to do next

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mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/12/2010 10:22 AM (GMT -6)   
cry Hi, I am so depressed all I can do is cry. what happened to my life. Everytime I start a treatment and believe me I've done them all except vancomycin.

My Dr wants me to keep that in case I get a really bad flu or whatever it's the only antibiotic I haven't done.

some days I feel like I am going to die. anyways every time I start a treatment about a month or so into it it always stops working.

I go to the Dr Tuesday and I don't know what else to ask him to try. I just did cleocin which was working in the begining but then all of a sudden I started feeling weak and having migraines and weakness in my arms and legs and pain (deep throbbing pain). and numbess and tingling.

I have so many things going on with me that all popped up after I was diagnosed. and basically a pill for all of them I'm just so tired my fatigue is off the charts this time.

any Ideas?

mainegirl/marlene

Mamyou
Regular Member


Date Joined Aug 2010
Total Posts : 317
   Posted 9/12/2010 10:31 AM (GMT -6)   
The story of my life the last 40 years. You can't give up...that means the ba***** wins. Now the question has to be...are you herxing??? If so, the world always looks bad when you're doing that...you know that but it's just a reminder. Everything I have tried either didn't work or quit working, or even worked the opposite of what it was supposed to. I can only offer you support, however, the more experienced members of the forum might be able to offer you solutions! I send my love and light to surround you. Is your doctor a true LLMD????

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/12/2010 11:00 AM (GMT -6)   
Thank-you for answering me . I know herxs. but this really feels like the drug stopped working. yes my Dr is the top Dr of lyme in NY. He is also featured on the movie under our skin. I am so sorry you have suffered for 40 yrs.

when for me it's only been 15. could I ask you how have you funtioned over those 40 yrs.
I can't do anything. I feel so bad even when I feel good that means i'm able to get off the couch or out of bed. and walk around the house.

can u still drive? since last yr and also since my mini stoke I 'm scared to drive. If I have to its behind my house to riteaid to pick up a prescription. but that does'nt happen often.

maybe your right maybe it's a herx?

I'm just tired of it all and all the meds. prayers to you marlene

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/12/2010 2:40 PM (GMT -6)   
Marlene,

I'm confused as to why you think the antibiotics stop working...just because you start feeling sick again? This is totally normal - you need to give them more time to work and get through Herx reactions, which can sometimes last for months, or be recurrent or cyclical.

madrivergirl30
Regular Member


Date Joined Aug 2010
Total Posts : 205
   Posted 9/12/2010 2:43 PM (GMT -6)   
Patti,

Good luck with your mammogram - try not to worry about it too much - chances are it's nothing. My breasts hurt so badly just to touch that it hurts to shower or clean with a bar of soap. I often have to hold them when I walk because just the slight movement, walking around, is agonizing.

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/12/2010 3:35 PM (GMT -6)   
thanks for the reply,

patti, I will say a prayer for u good luck on your mamogram .

madrivergirl30 after this many years. I do know how long herxs can last . and they come off and on after you start different meds for me it's usually 4th week into into it.
sometimes after a first dose of IV med Iv'e gotten a herx.

but I am very aware after this many years what a herx feels like for me and when my medicine has stopped working. everyone is different. thanks for your input.

mainegirl/marlene

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 9/12/2010 3:42 PM (GMT -6)   
Hi Mainegirl,
 
My opinion from research shows that we are in the age where most of us are resistant to antibiotics.  I really believe that long term antibiotics are not the answer to this disease but only cause harm.  I believe alternative medicine combined with eating healthy and detoxing on a daily basis works, at least it did for me and I still continue to detox daily to keep my immune system strong.
 
I believe people should become their own advocate and read as much as they can, afterall, it's your body and by what you wrote, it sounds like your body is telling you "antibiotics are NOT working!" so maybe listen to your body, it's trying to tell you something.
 
My motto is if your current protocol is NOT working, why stay with it?  Why not try something else as one can always go back on antibiotics, right?
 
I suggest reading Dr. Jernigan's book "Beating Lyme Disease" as that is the protocol that got me totally well and it's going on 5 years now that I have been better..  I read these posts and I feel so sad for people that are suffering.. 
 
Anyway, if you want to buy the book the only place I know to buy the 2nd edition is here (softcover is much less money and it's a wealth of information):
 
 
 
Hope this helps,
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

mainegirl
Regular Member


Date Joined Aug 2010
Total Posts : 61
   Posted 9/12/2010 4:58 PM (GMT -6)   
Thanks denise, I'm going to bye that book maybe I need to look into heavy detox . I did just get a urine test back checking for having heavy metals and I was off the chart on my lead and some other heavy metals.

I wonder after all these antibiotics and picc lines and ports if I'm really loaded with yeast and its adding to my problem.

how long did u suffer from lyme disease? and did u get diagnosed right away after your tick bite.

thanks so much for advice marlene/mainegirl

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 9/12/2010 5:49 PM (GMT -6)   
Hi Marlene,
 
Yes, most people have high levels of heavy metals including mercury which is not good.   As far as yeast problems, yep, many members do complain about that as well..  Kind of makes sense because antibiotics weaken one's immune system, kind of like a domino effect..  
 
I suffered for about 10 years and became infected from a spider bite (according to my skin biopsies), not a tick.   After 5 years from going to one doctor to another, I became so frustrated (and I was so sick) that I sat down and did my own research and knew I had lyme, finally found a nurse who I asked to perform darkfield microscopy and I watched my own spirochetes on the monitor and then my blood was sent to IgeneX and yep, lyme and ehrlichiosis...  So no, I did not get diagnosed right away, I heard what most people hear "it's all in your mind, you're depressed, you have CFS, whatever".. 
 
Anyway, I think you would be doing yourself the biggest favor by reading Dr. J's book, he had lyme so bad that he thought he was going to die..  I think Dr. J. is brilliant and really knows his stuff..  He explains it all and has a healing at home protocol for those who can't afford to go to his clinic.. 
 
Good luck and let me know how you make out okay?
Denise
It's all about Detoxing Daily, strengthening the Immune System mixed with a dose of Positive Thinking!
 
This song is about my years with chronic lyme since 1995 and being symptom free for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 
Currently taking Estrovera, ProgX (progesterone), Adrenotone Plus, CoQ10, Vitamin B Total, C, Green Vibrance, CALM (Magnesium/Calcium)

Simela
Veteran Member


Date Joined Aug 2010
Total Posts : 552
   Posted 9/13/2010 3:01 PM (GMT -6)   
became infected from a spider bite (according to my skin biopsies), not a tick.
_____________________________________

Denise, this is amazing, considering that many drs don't give abx treatement unless there is a rash OR at least some history of being in the woods! The spider bite could take place anywhere, even in one's home!

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 9/13/2010 3:46 PM (GMT -6)   
I have to agree with Deejavu on this - why keep doing something that isn't working? I am currently under the care of an Acupuncturist who is also a Master herbologist with both Chinese & Western herbs & am finally getting some real help.

Maybe it's time for you to look into other kinds of treatment???
Blessed are we who can laugh at ourselves, for we will never cease to be amused!!!! :)
May we all find peace along the journey to find healing.
"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav

Willowrose
Veteran Member


Date Joined Oct 2009
Total Posts : 699
   Posted 9/13/2010 5:31 PM (GMT -6)   
Deejavu, I've wondered and can't remember if I've seen the answer, did you do any abx or other treatments before doing Dr. J's? I wish I would have known more about it before starting on antibiotics but that's not how the information came to me. Also, I just found out this month that coinfections are also treated. It's interesting, and somewhat mind boggling, to read about what has helped different people. I keep a journal with those things in it for future reference. Certainly, if I get to a point where I think abx aren't helping, I'm ready to move on to something else. You and some other members here have been very helpful in sharing your experience with natural remedies.

Rose
I have Lyme; it doesn't have me.
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