cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hi all,
Thought it might be time to share some small success with you all, in the hope that it might offer some light to anyone who needs it.
I've been meaning to post this for a while now, and keep putting it off - waiting to be sure things are going as well as they seem to be.
While I'm not ready to shout that I'm a "success story"... I wanted to say that thanks to all of you here - for the past 4 years - I am much, much better and living a fairly normal life again.
Trying to be brief, 4 years ago I had diagnoses of MS, fibromyalgia, chronic fatigue syndrome, myofascial pain syndrome, and more.
These diagnoses came from close to 20 specialists that I'd consulted trying to find answers.
Not one of them offered more than symptom management over the years.
My life was spiraling down, quickly.
I was barely able to walk, and had to be carried up and down stairs.
The unending pain was ... horrific.
The fatigue - profound.
Even brushing my teeth would be enough to land me in bed.
We were in the market for a one-level home, rather than a multi-storied home with stairs.
Thanks to a very astute nurse practitioner and a lot of luck - I was pointed in the direction of my LLMD.
At that point I was diagnosed (by positive lab tests) with:
Lyme Babesia Microti Babesia WA-1 Erlichiosis Colorado Tick Fever (a tick borne virus) Chronic Salmonella (I had 5 different strains) Legionella EBV HHV-6 and a host of other viruses
The next few years of treatment were unbelievably difficult.
The initial joy that we now knew what was causing all the problems faded into one long, unending herx.
I did multiple rounds of babesia treatment, only to have it relapse again and again.
3 months of IV Rocephin helped, but I clearly needed more on-going treatment and we went the oral route for mostly financial reasons.
It's been 4 years now since I started with my LLMD. And I am grateful for her help every day of my life.
I have been off of abx since Feb, and am functioning at about 85 - 90% on most days.
There are some lingering issues - I have developed Hashimoto's Thyroiditis, Addison's Disease, and have problems with POTS.
Migraines are still a periodic issue.
Most of the remaining issues seem to be manageable through meds, but they slow things down at times, too.
There have been some GI issues to resolve, but these have improved with treatment dramatically.
For the most part though - my life is fairly normal again. I can care for my kiddos, and do most things that other people do.
That, for me, is a huge success!
Just wanted to share some hope, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
posted
Congratulations. You are an inspiration. Thanks for sharing.
Kathy
-------------------- Severe neurological problems. Probably sick for years. Became chronically sick in Aug 2007. Undiagnosed for another 15 months. Started treatment for lyme and bart Sept. 2008. Improving, but very slowly. Posts: 515 | From washington dc | Registered: Aug 2008
| IP: Logged |
posted
Thanks for posting Cactus. It is always encouraging to read stories like yours.
I was especially interested to read that you mostly used oral antibiotics. Seems like lately everyone wants to go the IV route.
Would be curious as to whether you used antiviral meds or herbs for all those viruses?
So gald you are getting your life back.
Hubby is not there yet, but stories like yours give us all hope.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Kathy - I replied to your pm.
Bea, thanks for the reply. You've been an inspiration for me over the years - because you are so tireless in your quest to help your hubby get well.
You've been through so much together.
I tried several anti-viral meds - each time they triggered crippling migraines and I stopped.
LLMD and I finally decided that the best route would be to treat the bacterial infections first and try to strengthen the immune system so that it could handle the viruses on its own.
That seems to have worked, knock on wood.
I have taken a multitude of herbs over years, of course, and various supplements. Some of which had anti-viral properties - I'm sure. Garlic is one I seem to go back to frequently.
All in all though - the viruses *seem* to be less active now that the bacterial/parasite infections are less active.
Sending healthy thoughts to hubby, and gratitude to you and all of the people who give so much of themselves caring for us, Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
I'm so happy for you! It's so great to read about someone coming back from this and actually functioning again.
It really makes a difference to those of us who are still relatively new to all this (and still scared) to hear from someone who's been there and gotten better.
Thanks for posting this.
-------------------- Take care -kelly --------------- Posts: 330 | From TX | Registered: Mar 2009
| IP: Logged |
CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
What an inspiring story! Thanks so much for sharing.
Best wishes, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
| IP: Logged |
posted
Thank you for sharing this with us! It is always so helpful to hear stories like this...especially for those of us who are at the beginning stages of treatment. Hope things continue to go well for you!
Take Care, Pam :-)
-------------------- Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting. Posts: 451 | From Virginia | Registered: Feb 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Thank you, cactus for inspiring me and others to keep going....to keep fighting and treating.
It is wonderful to hear how far you have recovered from being so sick.
I wish you all the best and hope you enjoy life to the fullest!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Yay Cactus, I hope that you continue to improve.
Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Great news! I think it is awesome for people to share any improvements they might have.
It gives hope to all of us.
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Congratulations Cactus!
Sounds like you've come a long way. Thank you so much for taking the time to share your success story. You are certainly an encouragement to me Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
congrats. I remember when we used talk. you were soooo sick!
hope it continues.
hugs, melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Congratulations..may each day bring you closer to total wellness
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
cactus,
WOW...thanks for sharing your heartfelt life struggle with lyme, co's and viruses.
Congrats to you AND your LLMD who both shed a sliver of hope to many who are losing the faith.
Wishing you continued wellness and final closure to what is now your last stretch of recovery.
Yay for you both!!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
| IP: Logged |
Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thank you for sharing! I'm so glad you're doing so well.
So how did you finally end up treating your babesia for good? Or is it still not fully treated? (as in, you are hoping your immune system will just take over the rest of it?)
Would be interested to hear! Because I have heard that babesia can be "opportunistic" in a way (obviously not when you are first infected though).
Posts: 4590 | From Midwest | Registered: Jun 2008
| IP: Logged |
Melanie Reber
Frequent Contributor (5K+ posts)
Member # 3707
posted
Oh Goodness... what wonderful news! I'm actually in tears, of joy, of course!
At times, we need to redefine the definition of 'Success'. And my dear, yours certainly does qualify.
Just So thrilled for you and your family. THANK YOU for sharing your progress with us, it does mean so much!
posted
Thanks for this encouragment Cactus! I am still pretty newly diagnosed and there seem to be so few success stories that hearing one like yours gives me a lot hope!
I know that probably when most people get well they don't "hang out" on the board anymore so that would explain why there aren't many here who post positive stories so it is nice that you came back to encourage us!
I really needed to read something like this....Thanks again.
-------------------- TxLymie IgG-Negative IgM - Postive bands 23 and 41
Other dx: 2000: Endometriosis 2009: Chronic EBV, Mycoplasma infection, HHV6, H.pylori Posts: 297 | From Houston | Registered: Jun 2009
| IP: Logged |
bettyg
Unregistered
posted
cactus, my dear friend!
WHOOPIE TIME FINALLY! i'm so happy to read the progress you made after all they found wrong with you!
that's pure DETERMINATION, STRENGTH, GOD'S WORK, family support, etc.
please copy your post above with your link and post in SUCCESS STORIES IN "SUPPORT" forum! it inspires and gives hope when they have hit rock bottom.
i'll pm you about something else
CONGRATS CACTUS! may your remaining road to complete remission be in the short distance ahead of you. hugs/kisses....
IP: Logged |
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
| IP: Logged |
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Hey all, and thanks for all the great replies!
Still crossing my fingers that this "holds" and that the improvements keep coming.
Glad that this post can give some hope to some, esp when the herxing seems like it will never stop. That is such a tough time.
I'm not saying I'm in remission, or cured, or totally well - I feel very reluctant to put a label on it, if that makes sense.
Just living life again, and loving it.
Every good day and moment is a gift.
I'm still here - I read every day, but don't post as often as some. But I've always kind of been that way.
Hoosiers - I can't remember when last we talked on the babs issue... eek.
I ended up doing a last few months of babs treatment - and whatever we did seems to have knocked out the remaining babs symptoms.
I say "babs symptoms" because neither LLMD nor I are going to say I'm babs-free.
So - it could be that my immune system is handling it. I'm not sure.
One thing seems clear - I will be practicing a higher level of self-care than I did prior to TBD treatment, to keep supporting the immune system. That will be a permanent change.
A lot of my symptoms seemed to clear up with addressing adrenal issues, too, Hoos, and I think some of those symptoms were muddying up the waters with regard to babs symptoms.
Happy, healthy thoughts to all! Cactus
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Thanks for sharing. Prayers for continued success.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
WildCondor
Unregistered
posted
Good stuff...keep up the fight!
IP: Logged |
posted
We need to hear more success stories!! Thanks for posting this....and continued good health to you!
Posts: 19 | From New York | Registered: Apr 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic