I just wanted to give everyone a little hope today. I haven't posted here in a long time, but I wanted to let everyone know that getting WELL is very possible.
I had misdiagnosed lyme, babesia, bartonell and ehrlichia for over five years.
After I had my son, I started to really go down hill with memory loss, derealization and a lot of brain issues.
I have now been in treatment for lyme and coinfections for one year and four months and I am almost 100%.
The only time I have symptoms at all is when my lyme doctor changes my meds and I herx. However, even now, my herxes aren't severe like they were for many months.
In fact, my lyme doctor tells me that after just a few more months of treating the coinfections very hard, I can get pregnant.
It's been a really long road and it's not over yet, but I'm living a really nice life now and I feel better than I have in years! You can to just keep at it and try to stay posistive!
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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I just wanted to add that 1.5 months into oral ABX my life has improved dramatically as well. Not saying I'm healthy or well, just not where I was for sure.
ABX work
Posts: 501 | From Cleveland Ohio | Registered: Apr 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Great news! Congrats!
I hope you don't mind my asking, but do you know if your LLMD is planning on treating you during your next pregnancy too? Thank you.
Posts: 4590 | From Midwest | Registered: Jun 2008
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posted
This is so encouraging. I needed to read this. I love when people post tangible improvements.
I have been treating for 2 months and seem to have stopped the night sweats. I can't wait till I actually feel good again. So hard to believe that will ever happen.
It has been 20 years for me.
-------------------- Sofi Posts: 150 | From Northern California | Registered: Jun 2009
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posted
That is wonderful news. Would you mind telling us a little about the protocol that worked for you?
Posts: 31 | From Boston, MA | Registered: Jan 2009
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bettyg
Unregistered
posted
welcome back lymers
please post your delightful post also in SUPPORT IN "SUCCESS STORIES" to provide more hope and optimisum for all who come here. big thanks my friend
yes, if you could tell about what you took for all the newbies who have come here and overwhelmed at oral, iv, and ALL ALTERNATIVE things happening; it would be most helpful to give them things to think about and decide what is best FOR THEM.
thanks lymers keep going strong and we KNOW you will make 100% in future days, months, or year! hugs/kisses
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CherylSue
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Member # 13077
posted
So good to hear! God bless you. Please post your protocol. We would love to hear.
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
lymers,
wow, you made it.
congratulations!! we are all so happy for you and wish you the best moving forward.
thank you for posting, its wonderful to hear such good news and gives us all lots of encouragement.
good luck on your family planning!
best in health!
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lymers, you mention you haven't posted in a long time, would you be able to refer us to your past posts so we can see the progression and treatment and responses to treatment? Posts: 255 | From - | Registered: Jun 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Congratulations to you on regaining your life and health!
I wish we could read new posts like this everyday!
-------------------- 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
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It was nice to read your replies. It feels good to be able to give you hope. I know with lyme disease sometimes that's all that gets you through each day.
To Hoosiers 51, yes. My LLMD plans on keeping me on antibiotics throughout the entire pregnancy.
To ecr1, here is a briefing of my protocol. I started out with three months of bicilin injections along with zithromax.
After that, I was put on doxycycline for a few months.
Then, we started treating the babesia with Mepron, zithromax and artimisinin. I did this for about 5 months.
Next, I was placed on bactrim and biaxin for several months and then we added in tindamax.
My most current protocol is zithromax, bactrim and my llmd just took me off the tindamax today (I was on that for 3 months).
For many months I also have been on some herbal tinctures-Enula (for babesia), BLT (for bartonella and lyme), and Mora (which I think is for bartonella).
I also did accupuncture for several months in the beginning. I would have kept it up, but it started to get expensive and I was making improvment without it.
To Betty and Lymetoo, I will definitley post in Success Stories ASAP.
To Pugs, I'm not sure how to direct you to previous posts. All I can tell you, is I used to post under the name Lymer (without the "s").
It's been a long road, but boy do I feel GREAT now!
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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posted
CONGRATULATIONS. Reading this makes my day. I am 11months into treatment from severe cogntive problems, derealization, etc. I am improving, but slowly. I too want to have a baby when I get well. I am glad that your LLMD thinks that it is possible.
Hurray!
-------------------- 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
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It's good that you're improving. Slow and steady wins the race with lyme disease. Keep at it. You'll get better.
And, yes, my lyme doctor says having a healthy baby after lyme is very possible. You just need to wait until you're well enought and then you should be treated throughout the entire pregnancy to avoid passing the infection to the baby.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thank you for responding, lymers.
I am getting to the point where I might be seeing some progress.
So will you not even take a break in your antibiotics when you start trying to get pregnant?
I am seeing progress, and I'd like to get pregnant as soon as I can, but I also am sick of being on the antibiotics. So part of me was thinking of going off, but then I realized I'd have to go back on to get pregnant.
So then I realized maybe it would be easiest to just stay on, and try to get pregnant once my treatment is complete..(but stay on the drugs, like I said, while I'm trying to get pregnant).
Hope my question makes sense. It's basically if you are going to take an antibiotic break or not before trying for pregnancy.
Posts: 4590 | From Midwest | Registered: Jun 2008
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I do not plan on taking a break from antibiotics before I get pregnant. I plan on beating back my coinfections as much as possible first and then trying for a pregnancy.
I do not plan on taking an anibiotic break, but I do know my antibiot protocol will have to be changed to one that is safe for pregnancy.
Have you spoken to your lyme doctor about your desires for a pregnancy? What has he/she said about the matter? I'm just curious if our lyme docs have similar opinions about the subject of pregnancy.
Lymers
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Yes, I have spoken with him about pregnancy. He believes that I will be able to have a healthy baby, no problem.
I am still a little nervous though.
I actually accidentally became pregnant a few months ago, and ended up miscarrying. I don't think it was due to Lyme though, because it was VERY early on, before the placenta was formed, and even before anything was visble on the ultrasound except the sac the baby will grow in, and the "yolk."
If anything, it was just a random miscarriage, or perhaps due to not high enough progesterone, etc. Though my "pregnancy hormone" tested high. (ob didn't test the progesterone however).
When we found out I was pregnant, my LLMD's PA consulted with Dr. J in CT (lyme pediatrician) just to be sure I was getting the most up-to-date care for pregnancy. (Dr. J does charge for that, contrary to what people told me...fyi)
Surprisingly, Dr. J recommended I go on Mepron during the pregnancy because of my positive babesia tests. Babesia was something my LLMD had actually told me was probably not harmful, IF it was passed without Lyme. (as in, the baby's immune system could handle it without Lyme). That was my LLMD's belief based on experience.
Anyways, my body HATES being on Mepron. I always feel exhausted and terrible on it, as a side effect. Being on it during the first stages of pregnancy was SO torturous, that I don't think I will choose to do it again. I will likely just do two pregnancy-safe antibiotics, like Zithromax with Omnicef.
So I am hoping to beat the babesia down sufficiently, before trying to get pregnant.
But that has led me to think that maybe it would be best to "try" for pregnancy right when I get off my anti-babs meds, because at that point, I will be less likely to have a babs relapse.
Not sure if that logic makes sense or not. It kind of sounds like what you described though, beating down the coinfections. Happily, I think in these past 6 weeks since my miscarriage, it seems like I've been making a lot of progress with babs. I'm starting to wonder if the babs is still there.
We actually might be seeing the same LLMD, because mine is in CA---Dr. H. If it is, I'd prefer you not mention me to him though, because sometimes I'm not sure how he feels about patients communicating about him online. (thanks for understanding).
Thank you so much for speaking with me about this. I'd love to keep in touch, because I may be trying for pregnancy in a year, or maybe sooner, who knows. Getting pregnant made me realize how important it is to me, to have a family.
Your story of seeing improvement is very encouraging to me. I would like to get over this, so I can get on with the important things in life.
Posts: 4590 | From Midwest | Registered: Jun 2008
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Yep. We share the same lyme doc. Don't worry, I won't talk to him about you at all. Please do the same for me, though, okay?
I'm sorry about your miscarriage. I know how depressing miscarriages are. I had one during my first pregnancy. I found out the baby had died when I was 5 months pregnant. I had to have a D&C performed because my body did not expell the fetus and placenta on its own.
My miscarriage was the greatest devastation I've ever experienced. The good news, though, is that I went on to have my son two years later. I did pass lyme and coinfections to him (I didn't know I had lyme at the time and had never been treated for it). He's the joy of my life and he's doing well with treatment. Dr. H. tells me he will be cured!
I'd love to keep in touch with you as well.
Brooke
Posts: 287 | From Humboldt County, CA | Registered: Jul 2009
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Hoosiers51
Frequent Contributor (1K+ posts)
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posted
Brooke,
So sorry to hear about your miscarriage. Sure, I will not mention you to Dr. H, of course.
Yes, we should definitely keep in touch. It was great of you to come on here and update all of us on your progress...please keep the updates coming!
I have used, or am currently using, a lot of what is included in your treatment plan. I do have faith in these meds, and it's great to hear of success. Very happy to hear your son should make a full recovery as well. It seems like children do very well with treatment.
Wishing you well,
"Hoosier"
Posts: 4590 | From Midwest | Registered: Jun 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hi Hoosiers,
Sorry to hear about your miscarriage. I was wondering what happened because a few months ago you were talking pregnancy and then you stopped.
Hopefully, you'll be in a better place treatment wise when you get pregnant again.
Hugs, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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posted
awesome love success stories!!!! hoosier-- i knew you were pregnent, but i didnt know about the miscarriage, sorry to hear that
Posts: 217 | From Everywhere | Registered: Nov 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
Thanks CherylSue and Brian.
I think I updated in General Support once the miscarriage was confirmed, but not in Medical, because I didn't want to distract everyone with my issues. Thanks for caring.
Posts: 4590 | From Midwest | Registered: Jun 2008
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