posted
Hello to everyone, I am 20 years old and I was diagnosed with Lyme Disease, Bartonella and Babesia on March 14th of this year. My Lyme doc says I have probably had this for 6+ years. I have suffered for so long now that I am losing hope rapidly. I started treatment in March and I am now on a ton of meds and supplements. All through these last 6+ years I have been diagnosed by hundreds of "doctors" and "professionals" with major depression, anxiety, aspergers syndrome, high functioning autism, disassociative disorder...the list goes on and on. My Lyme Literate doc says that they were all wrong and that all of my symptoms have always been from the Lyme and the co-infections. I am glad to finally have an answer, but since I've started treatment I am so much worse and I am afraid to go on. I am supposed to keep taking the oral meds and then I'll probably start Levaquin and Rocephin shots. Then my doc wants me to do hyperbaric chamber treatment and IV for 6 weeks. I am SO scared I don't know what to do. I don't remember what it feels like to feel healthy and have a shred of joy or hope in my life. I am afraid to be inside of my body. I am just looking for some support and words of wisdom/advice. Thank you to whomever reads this, ~LymeFighter
-------------------- "...Celebrate the bitter, the tart, the sweet of the here and now, all before it succumbs to the pull of what was and vanishes into a fog of what might have been." ~Susan R. Norton Posts: 21 | From Northern California | Registered: Jun 2006
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posted
Welcome to LymeNet! Sorry you are sick, but you have come to the right place for answers. Lots of friendly helpful people here.
Could you tell us which meds you are on and the doses?
It is normal to feel worse before you feel better -- there is a name for this -- it is a Herxheimer (herx) reaction. Your body gets overwhelmed with all the dead bacteria and toxins from them.
Many docs suggest decreasing doses on meds if things get too bad. You should talk to your LLMD about reducing the doses.
Since you have been sick for several years you may need to treat only one infection at a time instead of treating them all at once.
Have any of your symptoms improved? Which symptoms are the worst? Do you have aches and pains and other symptoms besides the "psychiatric" symptoms you listed?
Might help if you could list your supplements as well.
Have you tried any detox things -- epsom salts baths, lymphatic massage, foot patches etc etc?
If you can give more specific info then other people can better offer advice on specific things to do.
Hang in there.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Lymefighter,
I'm glad you're here; Bea's right -- this is a really good place to come to vent and to get some help.
It would be helpful to know the abx you're on and the dosages.
You say you started treatment in March. I was warned, when I first started antibiotics last June, that things would get a lot worse before they got better.
That's exactly what happened. Things were already bad, and then they just got worse. New symptoms emerged; old ones flared. I couldn't believe how awful I felt.
But I hung in there.
Now, I'm really glad I did. It's been just under a year of treatment for me, and things are so much better now. In fact, each month, they got better and better.
The tricky thing about Lyme is that it does manifest differently in different people. But a lot of us do improve. It takes time, but it can definitely happen. I've finally started to gradually cut back on my antibiotics.
For me, doing this has been very helpful. When I lay those monthly charts out sequentially, my progress is unmistakable. On occasional bad days, that's a good thing for me to see.
Hang in there, lymefighter!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am getting better and you can too.
Please don't lose hope. The herxes can be hard because you never know how long they will last. But just try to remember you feel so bad cuz the lyme is dying and you are that much closer to feeling better.
I know when you are so far down in the hole it seems like there is no way out and you are going to stay in the dark forever. But trust me things do get better and you will reach the light and crawl out of that hole.
Know that you are finally on the right path to healing rather than treating or managing symptoms. It isn't easy but people do get better.
Come and vent, educate yourself as much as you can. Treat yourself well, and try to stay positive.
-------------------- Lucy Posts: 342 | From Hawaii | Registered: Nov 2005
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
I remember how you felt because I was there; so in a sense, I remember you.
I couldn't think, I couldnt move without severe pain, I couldnt focus my vision, I couldnt work, I couldnt drive. I COULD sleep ALOT.
This WILL get better. It took me two years of steady antibiotics to say " i did it" it took me a year of detox and yeast treatment after that
to say " I REALLY did it".
I now can see, drive, play with my kids, work , stay awake, go without pain cause I aint got any
I was 26 when I got sick, with three little ones at home.
Getting worse after you start treatment is normal yes AND very difficult, but it means you are doing the right thing. Please keep doing it. It was very hard with me with the kids
but with family, I got through it.
U can and you will and one day, you will be telling others to hang in there.
Keep going.
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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bettyg
Unregistered
posted
Welcome lymefighter! Breaking this up by hitting enter often & double spacing between each paragraph for us neuro lymies to read/comprehend. Thanks for doing this in the future.
quote:Originally posted by LymeFighter: Hello to everyone,
I am 20 years old and I was diagnosed with Lyme Disease, Bartonella and Babesia on March 14th of this year.
My Lyme doc says I have probably had this for 6+ years. I have suffered for so long now that I am losing hope rapidly.
I started treatment in March and I am now on a ton of meds and supplements. A
ll through these last 6+ years I have been diagnosed by hundreds of "doctors" and "professionals" with:
major depression, anxiety, aspergers syndrome, high functioning autism, disassociative disorder...the list goes on and on.
My Lyme Literate doc says that they were all wrong and that all of my symptoms have always been from the Lyme and the co-infections.
I am glad to finally have an answer, but since I've started treatment I am so much worse and I am afraid to go on.
I am supposed to keep taking the oral meds and then I'll probably start Levaquin and Rocephin shots.
Then my doc wants me to do hyperbaric chamber treatment and IV for 6 weeks. I am SO scared I don't know what to do.
I don't remember what it feels like to feel healthy and have a shred of joy or hope in my life. I am afraid to be inside of my body.
I am just looking for some support and words of wisdom/advice. Thank you to whomever reads this, ~LymeFighter
lymefighter, welcome to this 24/7 board! My heart goes out to you ... just as it does for ALL of us on this board.
Here are some newbie links to check out.
Welcome to this 24/7 LYME support group board!
Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Burrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol''s newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl''s extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn''t cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated YES, I have what you have! Are you on doxy too? That made my extreme eyes
200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board.
Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word! http://tinyurl.com/
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that''s why I currently have LONG addresses vs. short tiny ones! I''ll keep trying.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Welcome LymeFighter,
You've received a lot of great info so far. But also important, as others have said, is to feel free to ask for emotional support here.
While undergoing treatment, the flares, or Herxheimer Reactions ("Herx" for short) can especially cause severe flares in the Depression and anxiety symptoms from Lyme.
Believe me, we've been through it. Don't be embarrassed to ask for help.
And ALWAYS be sure to let your LLMD, Psychiatrist/Psychologist (if you have one), friends, family, know if you are feeling suicidal.
Many of us have been there, too.
Also, be sure to let your LLMD know if you feel your physical symptoms are getting too strong, or if you feel you are having a reaction to medications.
Sorry you're going through this, but glad you found us.
Oh, and young people (like you) tend to have a much better success rate with proper treatment. So try to hang in there, okay?
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hello, LymeFighter!
I hate Lyme for messing with young people like you who should be out rippin' and rarin' instead of feeling low.
As other posters have mentioned, lyme people usually gotta get worse before they start getting better.
But think how nice the getting better part is going to be.
And how lucky for you to have found the proper diagnosis...imagine life if you hadn't!!!
A journal is a really good idea, since day to day things might not seem to change much, but over a few months they might look a WHOLE lot different.
I'm also in northern California myself..we might even have the same awesome LLMD! (Though of course we cannot mention doctor names here).
Feel free to "private message" me anytime!
Things are going to get much, much better. Please don't lose hope. Come here often with questions, or just to vent or rant! People here ALWAYS truly understand and relate...
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
Hi Lymefighter,
You got some good advice. I would only add, get plenty of rest. Your body is using a lot energy to fight a disease. The aches, fatigue, depression, anxiety, and brain fog will be that much worse if you are not getting enough rest. Rest and sleep as if you had a bad case of the flu.
Also, step out into the fresh air, every day if you can. Our bodies tend to have a hard time coping with lights, smells, sounds, and toxins in the air that we normally process easily when we're well. A little fresh air always helped me clear my brain, and I now think it had to do with the molds and chemicals that build up indoors (and my house isn't THAT dirty, lol!).
Hope you will feel better soon, so you'll know you're on the right track, Shaz
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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WildCondor
Unregistered
posted
Welcome LymeFighter!
We are here to support you. Most of us have been in the same scared situation as you are. Your Lyme doctor is likely correct. Most of these symptoms, if not all of them come from tick borne infections. Email me anytime or send a private message and we can talk more. I have done IV and hyperbaric at the same time. Let me tell you this, it will get better! Try not to be scared ok, you are on the right path now. You found a doctor and you know what you have, plus you found a great support system right here!
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bettyg
Unregistered
posted
Wild Condor, you have outdone yourself today with your graphics on here and Tncup's post...
They liven up my reading when I see them.
Lymefighter, hope things are going better and start using some of the advise given above to help you out. WE CARE ABOUT YOU & ALL LYMIES.
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posted
I am also starting treatment soon, gave me alot of hope reading this thread! I did try Samento but it was really unbearable so I am now going on the ABX, and I really think I am ready to kill these little critters!!!
Good luck Lymefighter, keep killing them!
Posts: 263 | From UK | Registered: Mar 2006
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Be just what your name says. Fight, you will get better. I am proud to say I did!
I started this nightmare in 1999, Lyme, Babs, Bart, along with others. I spent 5 years on antibiotics, IV's, orals and injections.
With the power of antibiotics, prayer, bio-feedback, supplements and other forms of alternative medicine, I have my life back. Am I 100%? No, most of the time I am 95% and who can complain about that!
My LLMD told me that the best we can hope for is remission. I am there! I have been off of "full time" meds for 2 years now. I have had to go back and take a round of meds now and then, but that is it. I continue to use bio-feed back and alternative medicine to fill in the 5%, but there is truly hope!
Your attitude will determine the direction of your treatment and your body's response to it. Be positive, get a good outlook and convince yourself that you will beat this. You will!
JJ
Posts: 919 | From Minnesota | Registered: Jan 2001
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