posted
Hi everyone. i'm new here. I have a positive Lyme test from iGenex that I had taken in September of 2008. Up until this summer I had no idea about chronic lyme or any of the coinfections. Now six months later I come to find out I am positive for Lyme and have been clinically diagnosed for babesia and bartonella. The kicker is that I have been sick since 1993. After a bumpy start I now am under the care of one of the top LLMDs (by reputation and and years experience).
I started on his protocol 9 days ago. He's slowly been adding in new medication. In five more days I'll add in Mepron which will be the last medication he's adding in at this time.
So far it's been ok, but today i'm having a rough time. I am feeling pretty down, don't have much of an appetite and have felt on and off again sick to my stomach. I would like to read more on this site, but looking at the monitor for too long is very hard for me because of my extreme sensitivity to light.
I'm trying not to, but can't help but think this is day nine of SO MANY MORE hard days to come. It is hard to accept how long it may take me to get better, if getting better is even possible.
It really is so discouraging and upsetting If anyone has some words of encouragement who is further along with their treatment, I'd really appreciate hearing from you. Thank you!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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posted
Congrats on starting your treatment!!! When I first started after just 5 weeks on oral biaxin all the pain in my hands disappeared.
You will feel lousy some days..... it's true.
But you will also have some wonderful "normal" days where you will be so happy and thankful and giddy.
Mepron!!!! Yicky. yellow paint. Soon you will love Mepron because after about 7 months (me) you will feel like a blessed miracle has touched you.
You can do it. Keep us updated. Love and healing thoughts going your way.
-------------------- Suffering too many years to count. Can't remember anyway!!!! Posts: 46 | From It's News to Jersey | Registered: Mar 2008
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posted
Hi laura!!! Well thank goodness you finally found out what is wrong with your health! AND - to be in good hands!! It's true - there are many days ahead but you will eventually have days of wellness here and there. For me (after 7 months of treatment) I have had 3-4 days of feeling well strung together!! And they say you must give it at least 18 months of treatment!! I'm not even half way there yet! It's been 15 years for me since I was infected - like you! I look forward to a day when you will post that you have had better days - or you are encouraging a "newbie" to hang in there - "It will get better!" I suggest you go to the "Newbie Link" here and print some interesting things to read and learn about this disease. The more you learn - the better off you will be. Best Wishes and Get Well -peedie
Posts: 641 | From So. CA | Registered: May 2008
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I was sick when I first started my antiboitics too! I started in Nov. 24th. I have had some "herxing" but the thought of being able to do what I want to again is really what is keeping me going!!
Thank goodness you found and good LLMD and you are in good hands!!! That in itself is HUGE!!
Get better, so you can help others get better. You will begin to recognize that several people around you have symptoms of Lyme. You might save them!!
Again, good luck, YOU CAN DO IT!!
Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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bettyg
Unregistered
posted
hi laura,
before i forget, you mentioned light sensitivity to your pc screen.
here's what i do/have done:
1. reduce the brightness/contrast to 0 - 10% at MOST !! see what feels the best for your eyes.
2. worn my NOIR, no infrared sunglasses, at my pc ... really helped too.
3. having view to LARGEST and in r. corner ... increasing that to largest i can to read across the screen.
read the SUCCESS STORIES at top of SUPPORT !! that will cheer you up.
you are going to have to hit rock bottom before you start climbing the stairs to REMISSION! it's something we all have to do to KILL OF SPIROCHETES in our bodies.
wishing you the best; we are walking in your shoes!
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Hang in there. We are always here for you.
It is a bumpy road, but one worth taking.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Encouragement? how about the Success Story Thread. Top of General Support Forum, or link at bottom of this post. Read, read and read everything about lyme you can.
I had extreme light sensitivity too. It has gotten so much better with treatment.
I'm finishing up 1 year of aggressive treatment. The road is bumpy but I'm getting better.
You will too.
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Hi Everyone, Thanks for the words of encouragement. I have read the success stories. I wish there were more so I could feel certain that one day I will feel normal again. Although, I don't know what normal is anymore as it's been so long.
I have three symptoms I'd give anything to get rid of and that's mostly what I spend my time on here doing.... Seeing if anyone has recovered from these symptoms during treatment. They are depression, anxiety and WORST of all: depersonalization (feelings of unreality).
Do/will this horrible feeling ever go away? I just want to get a glimpse of that light at the end of the tunnel. If I know it's possible the fight will be a lot easier for me.
thanks!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
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posted
Hi. I just wanted to say anxiety/depression/ brain fog were my worst symptoms too.
For me Rifampin/Doxy/plaquinel really helped my depression/anxiety. It is almost non existant.
I pray it lasts.
Be Well
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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posted
Hi TS96, that is great to hear! thanks for sharing!!!
Before you started treatment were you on an anti-depressant or meds for anxiety? If so, are you off of them now.
I like your signature quote... very true.
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
| IP: Logged |
posted
p.s. you say the meds have helped the anxiety and depression. what about the brain fog? is that any better? hope so!
-------------------- Misdiagnosed and untreated from 1993-2008. - iGenex positive western blot for LD: 9/08 - Clinical diagnosis for Babesia: 2/09 - Positive blood smear for Bartonella: 3/09
Started treatment: 1/09 Posts: 91 | From New Hampshire | Registered: Jan 2009
| IP: Logged |
posted
Hi Laura. Nope I took no drugs for depression/anxiety, just some St. Johns Wort, 5HTP, and some Bach rescue remedies but they did not help much.
I really wanted to know for sure if my anxiety/dep was totally from the lyme and it was because it did go away with treatment.
I still have quite a bit of brain fog but it is much better to deal with when the depression and anxiety are gone.
It's like.... Oh well I can't think but at least I'm happy and don't feel like the world's gonna end anymore.
hope this helps.
Keep encouraged
-------------------- Bart Henslea 1976 Fibro/CFS/arthritis 2004 Lyme diagnosed 2007 3 1/2 years treatment with oral combos, Cowden, IV roc. BW herbs. Off all abx in 12/10. Feeling good. Posts: 647 | From NY | Registered: Dec 2007
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It will take time but the brain fog will lift. Please read Dr. B's supplement list. There is stuff on there taht will help. i take it all and cleared my brain fog by about 95% ...granted i have not been sick as long as you.
Ps...you are in the right place...when your down just reach out and someone here will pull you up..that's about the only thing you can be certain of...that and the fact you will get better!!
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
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If anyone has some words of encouragement who is further along with their treatment, I'd really appreciate hearing from you. Thank you!
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