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» LymeNet Flash » Questions and Discussion » General Support » Read this if you have lost hope.....

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Author Topic: Read this if you have lost hope.....
GNBRETT
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Member # 17241

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I live in Connecticut. I just thought I would share my experience with Lyme Disease and its co-infections. Ill be short but have some faith if your just miserable and think there is no light at the end of the tunnel....

I got bit 5 years ago. Sypmtoms began approx. 8 months later that I can remember.....

Anxiety attacks, twitching, Insomnia, neck pain, back pain, depression, light sensitivity, dizzy many months, suicidal thoughts, eye pressure, headaches, fingers stuck together, vomiting, muscle pain, fatigue, etc..... you know the drill. The kind of MISERY you probably wouldnt even subect a child molester subjected to!

Tested (3) times thru Quest labs and showed up negative. big surprise there right.... finally found an LLMD and sent blood to Igenix.

Results: (5) bands and FISH positive for Basesia. No other co-infection positive or should I say evident.

I can only look back and chuckle a little at how miserable I was and if not for a lab like Igenix to at least identify my problem I highly doubt I would still be here to share this. it was that bad! but many reading this im sure can relate.

I started Mepron/Zith and got on a PICC line to receive Rocphen. After about (4) months my Basesia symptoms completely vanised pertaining to muscle pain and headaches.

Continued on PICC line for (3) more months for (7) straight months on the PICC line. Totally cured. No further symptoms. Although I was left with light sensitivity but other then that perfectly fine.

(2) years later I get bit again in the summer time. I really hate ticks.

Well, dizzyness begins. I go straight to doctore and get full work up done. (8) bands positive. Basesia: Negative. no other co-infections postive. Can I be this unlucky? Apparently so.

Back on the PICC line for (5) months. Perfectly fine. No syptoms. back to my normal life again.

For those on the fence whether or not the PICC line is worth it or will it really help? It is. I know not everyone has the kind of insurance or doctors that will get them on the PICC line but if there is a way I would surely look for it if you can.

This Disease can kick your ass and suck the life right out of you. Have some faith knowing that IV Rocphen really does work for most.

Posts: 59 | From CONNECTICUT | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
chastain
LymeNet Contributor
Member # 34236

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hi there! congratulations on your recovery! i am thrilled your treatment worked so well for you! i have to put in one caveat to your amazing story however-i dont think its necessarily true that iv and specifically iv rocephin work for everyone. i did iv rocephin for months and saw no benefit. some of us arent so lucky, but hopefully we can still hope for some relief as well!

again, congrats for your recovery, and may you live a wonderful life! Love jess

Posts: 651 | From ct | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
GNBRETT
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well, if you only did it for a few months then that wasnt long enough.

my friend has been on it for a year now and continues to improve. everyone is different and it depends how much bacteria is in ur body and how long u waited before treating.

I know several people who have been on the PICC line and ALL have gotten better as a result. usually 6+ months of treatment and longer.

im sure there are some that dont respond but that is usually because you have a co-infection that Rocphen is not addressing. but as far as Lyme goes it works for "Most" like I said in my post. not "ALL" but most......

Posts: 59 | From CONNECTICUT | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
GNBRETT
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btw, thats Babesia in my thread not Basesia. trying to type and watch TV at the same time....oops
Posts: 59 | From CONNECTICUT | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
chastain
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i am thrilled again for you and your friends, gnbrett. i hope you stay well! love, jess
Posts: 651 | From ct | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
linky123
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Congratulations and thanks for sharing your experience!

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

Posts: 2607 | From Hooterville | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
sbh93
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Congrats and just wanted to say that I have a relative who had a similar experience. She's been on me for months now to do iv. She is a nurse in an area with many docs familiar with lyme and they all say the same thing--iv for neurolyme, only proven thing...

--------------------
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It took 20 years to find out I'm not crazy.
New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco.
I am not a doctor and happily offer only my own opinions.

Posts: 357 | From The Beach | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

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Iv rocephin got me back from the dead three times, but relapsed after a few mos. tried 4th time, couldn't cut it. Sick since 11/09 this time. [Frown]

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He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
   

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