Thought I would come back and see if there was anything I could help with. My mother just started her treatment last week after constant nagging by me to stop accepting this as old age!
I had debilitating Neuro Lyme and Babs. Had it probably 5 years before diagnosis. Took 2.5 years of solid antibiotics. Had to quit my job, leave law school, withdraw from society, and really re-define life.
I couldn't walk and I couldn't make out sentences during the first few months of herxes, but I could stay on a horse, which was a miracle. I was so Type A, to not have had this outlet, even just sitting there walking around like a snail, would have destroyed me. I also had a horse survive Lyme who I looked to for inspiration, as well as the best family and friends ever. OK, who am I kidding, not many people understood, but the ones that stood by me mean everything to me now.
During Flagyl I was a suicidal maniac. I would scream, cry, wrench, hallucinate . . . I had to be supervised by hubby or Mom. Lexapro helped some. It was like demons were scratching through my pores. All I can do is shake my head to think of it now.
Saving grace came when I finally pushed for an IV of Rocephin. Took it for two months after 2 years of pills. I am firmly convinced if I hadn't waited that long, the strength of the IV meds would have killed me. I had to wait that long unfortunately to kill off enough bugs as to not overload me.
I am now 80% healthy after coming out of treatment last August. There are still days where I really lag. I think of it like people with Epstein Barr. It is a hinderance, but I have my life back. I can work all day long now, have intelligent conversations, handle driving, movement, most sounds, light. My muscles hurt now like a 50 year old instead of a 90 year old! (I am 30) It is all manageable. Life is worth living again. I have joy and the ability to appreciate it.
I always told my family if it wasn't for them, I would never have fought through the disease like I did, not just for me. But now that I am well, I sure am glad I did fight, for ME.
I will try and check back if there is anything I can help with.
Posted by Dave6002 (Member # 9064) on :
Thanks for comming back to tell your story, which is very encourageous.
I do need your help: when you on Rocephin, what meds you were on for Babs?
I am going on IV Rocephin and I may have Babs and Bart.
I want to address them while on Rocecphin.
The other med I'll take is Tini.
Thanks.
Posted by timaca (Member # 6911) on :
Wink9~ Thanks for the encouraging words. I sure needed them today.
Timaca
Posted by bettyg (Member # 6147) on :
Wonderful; another SUCCESS STORY!
Please copy and post as a reply to the SUCCESS STORIES THREAD on medicl or general. Thnks for sharing GOOD HOPE.
Posted by Ann-OH (Member # 2020) on :
Good for you! Your persistence is an inspiration for all of us.
Thanks! Ann - OH
Posted by Wink9 (Member # 4516) on :
I did Mepron/Zith for my Babs for 3 months twice. Probably within 5-6 months of each other.
I am no 100% sure that I am rid of my Babs, but it's manageable. One symptom I still get a lot is sweats, but them my thyroid gets too high sometimes.
I don't think you should take anything for them while you are on the IV. That would just be too much. Wait until after the IV, then hit them hard.
I know you want to get well ASAP because it's awful, heartbreaking and expensive, but I would take it one stage at a time.
Posted by Wink9 (Member # 4516) on :
Oh and thanks everyone Ann-OH your emails have helped a lot of us!
Posted by Biting Back (Member # 6018) on :
Thanks for the inspiration and hope Wink. I really appreciate it!
Posted by jaykay (Member # 8448) on :
Thanks for writing this.
I can barely take any antibiotics (oral or IV)--always wound up in the ER. Horrendous herx--brain exploding feeling. Now, I would know what to expect.
I am herxing on multi-vitamins and small doses of salt/vitamin C. So much, that I am suicidal. It's truly unbelievable. I feel like my head is sizzling, gel is moving around constantly, steel glue is pushing up and down my spine. (Does anyone have this?) I even have it when I don't take anything, but not as bad. (I had been extremely ill for over 10 years prior to diagnosis.)
Want to try antibiotics again, but not sure I'll be able to tolerate...
-jennifer, NYC
Posted by Wink9 (Member # 4516) on :
Just remember it's not you. It's the bugs. Take it very seriously, but try not to judge yourself based on what the bugs in your body are doing.
You must have a pretty good dose of Neuro. You've got to start somewhere though. Get back to a LLMD and take one med at a time as light as you can. If you are going to be miserable anyway, might as well be killing some buggies while you are at it, right?
I know how hard it is to see the light. Baby steps. Push forward. Find anything you can to baby yourself. Make sure you know there is YOU and then there are the BUGS. It is NOT YOU that is feeling this way. It is the bugs doing it to you. YOU are perfect and wonderful, just sick, but it won't last forever.
Posted by Dave6002 (Member # 9064) on :
Thanks Wink for your useful information and suggestions.
You are right about baby step.
Although we want to get well as soon as possible.
But remember that this disease is a chronical disease not a acute one.
So short guns might be better than rockets.
jennifer, I understand that you were herxing on multi-vitamins.
I was too herxing on garlic clovers and I was blaming garlic when I didn't know I had Lyme.
Sounds unbelievable but it's true.
So for you, Wink's suggestion may be worth considering.
Start at very, very low dose of abx or herbs that you can tolerate to slowly kill the bugs.
Once the number of the bugs has been reduced, and your defense system become stronger, increase the dose gradually.
Baby step in killing bugs and strengthen youself.
Finally you will get them.
Posted by trails (Member # 1620) on :
Thank you so much for coming back and telling your story---You nay not know how DESPERATEly some of us need to hear recovery stories!
Rocephin gave me my life back in 2001, but I relapsed 4 years later and havent been able to get back up again. Insurance wont pay for enough IV this time, so it is the slow route of orals for me for now.
You really have a good sense of understanding the emotional devestation that happens with this thing. Rips through your core of your soul, I tell ya.
What other physical stuff have you had to deal with along with lyme/babs?
Did you have hormonal issues? endo? yeast?
If so how did you correct or deal?
Thanks again for your inspiration and dedication to helping some of us! you rock! Trails
Posted by Wink9 (Member # 4516) on :
Oh Lord . . . (arms straining as she lifts Lyme docs onto table)
I'll have to do this in 2 parts, but I'll do it, in case it makes anyone else feel "normal" if there is such a thing . . .
1998 Summer: sore throat/flu All-over body rash a few weeks following- treated as scabies until tests came back negative Allergies/Exzema started Fall: Fatique, muscle pain, hair loss, weight gain, dry skin, inability to sweat, flu-like symptoms, intolerance to hot/cold. Winter: Nuclear Thyroid Scan- diagnosed with Hypothyroidism
1999 Thyroid surgery- removed left lobe Began treating with Endocrinologist Muscle pain continued with headaches and fatique CT Scan of head for headaches- negative PT for muscles and pulls Began treating with Rheumatologist Tested for Lupus, Rheumatoid, Sjogren's Diagnosed with Fibromyalgia Recurring tonsilitis monthly Examined by eye doctor as eye sight now getting- diagnosed with stigmatism
2000/2001 Breasts now very sore- tested and diagnosed with Fibrous Breasts Dizziness very increased, tested and diagnosed with Vertigo Allergies now worse, began 2 allergy shots a week Recurring tonsillitis/sinus infections Tested for carpal tunnel- negative TMJ worsened- new and improved $800 appliance
2002 Abdominal pain and gastro problems began Gastro Ultrasound negative Upper GI negative Gall bladder enzyme test negative CT with contrast showed diverticular changes and ovarian cyst Gyno ultrasound negative Colonoscopy negative Recurring tonsillitis/sinus infections Concentration/focusing problems- dialing phone Back to allergist again for worsening symptoms
2003 Neurological problems increased- dizziness, inability to process info Walking into walls, loss of strength Eye pain- back to Dr- no changes Back to Rheumatologist- told classic Fibro Back to Gyno for pelvic pain ER visit after near collapse in public- diagnosed with bladder infection and depression Recurring tonsillits/sore throat July: PCP tested for Lyme- negative July: LLMD diagnosed based on clinical finding
Posted by Wink9 (Member # 4516) on :
Meds I was on to mask all of these symptoms before I finally got help
And then here are my symptoms from Month #1 of my first (6 month long)Herx. This was just from Biaxin 500 mg 2X daily
Remember these were written while I was sick, so some are repetitive sounding now
Toenails hurt Crawling/itchy sensation on skin Skin aches like bruised, but no bruising Radiating pain down arms Sore skin on left forearm Burning, throbbing back muscles Heartbeat felt pounding in my shoulders Cardiac fluttering and stress Burning headache instead of throbbing Extreme fatique Anxiousness/Irritability Throbbing knees Painful to walk on feet in PM Sweats/chills Temp way under normal or 99 Depression Voracious appetite or no appetite Throbbing calf muscles Throbbing muscle in butt Hands ache Diarrhea Muscle spasms: arms, back, legs Loss of balance Weak knees that give out Extreme throbbing pain in hip Burning eyes Pounding headache Loss of leg strength Brain fog Variable light sensitivity Extreme sound sensitivity- especially sharp or pounding noises Walking into walls Interrupted sleep Insomnia Nightmares Must saleep in coldest area Rash Tingling in hands Aggravated TMJ Pain in ribcage Extremely sore throat Sore ears (internally)
Posted by Wink9 (Member # 4516) on :
My symptoms now are pretty okay.
My allergies are still bad, but BETTER I am still achey but not throbbing or stabbing I get fatigue, but it is usually diet induced and can be controlled I am very yeast prone but it takes very little maintenance and 80% of the time goes away on its own!
My biggest problem right now is "female" with Endometriosis, yes . . . Grrr.
Posted by jaykay (Member # 8448) on :
Thanks so much for all of this!
The herbs and multi vitamins/supplements and salt/Vit C that I have been taking now for 1.5 years I guess are lessening the load. I do have improvement. The herx is unbelievable, unrelenting.
(been ill over 10 years prior diagnosis--very scary symptoms/herx reactions..will post one day)
I was NEVER able to take anything--not a vitamin or even a bit of ginger without horrible symptoms. Now i know why... (I had to start very slowly)
Perhaps, I can get rid of this without more antibiotics if I am herxing so badly on the herbs/supplements/salt-vitC??? We shall see... Any imput welcomed.
-Jennifer
Posted by Wink9 (Member # 4516) on :
Jennifer- you might be able to? There are people that go that route and it is A-Ok. For me, even though I HATE putting manufactured medicines into my body, I needed that "sure-thing" feeling that the antibiotics gave me.
There are usually lots of good resources on here for the natural/herbal way. Just be careful of those that might just be trying to sell them. Posted by trails (Member # 1620) on :
Woah, lots of stuff. You could be my secret illness twin though from the look of your list!
Endo is just as insane as Lyme is and just as difficult and expensive to get it treated properly. I have loads of resources if you are interested in learning all you can about it. Private message me.
Also there is one study linking the two diseases. I think there should be MANY MANY MORE. There are MANY MANY women here who have both Lyme and Endo and never had any ENDO symptoms before Lyme.
One more question, Why stop ABX when you arent 100%?????
Trails
Posted by Wink9 (Member # 4516) on :
Why stop when I'm not 100% . . . From what I've read/heard, it takes the brain 10 years or so to heal. Since most of my lingering problems are neuro, I think it's just going to take time.
My immune system works again- how funny the first time I didn't get a cold when everyone else had it! So, I figure it's to a level now that my body can handle it.
I have come to terms with the fact I will probably always have some of it in me and that I can relapse at any time. We have changed our lives around so that I have as little stress as possible.
Posted by trails (Member # 1620) on :
Wink, I really disagree with the protocol of stopping before you are almost 100%. ANd thinking that you are ready or prepared for a relapse and actually having one are two different things. Your body and mind forget the the pain and the anguish so quickly, and they are NOT easily persuaded to remember or to realise that it could be hell time for another few years. Relapses dont always present with the same symptoms either, they can be tricky and hard to diagnose.
Most LLMDs are now treating until all symptoms are clear. One of many mistakes of mine was to stop treatment about the same point as you---about 80%. I wish I had done another 6 months or a year of ABX. It would have put me worlds ahead of where I am now.
I am not a doc, and I dont like to criticize what others choose to do with treatment, just trying to watch out for the pitfalls I fell into.
Take care, trails
Posted by Wink9 (Member # 4516) on :
Hi friends,
Just wanted to check back in and lend some hope to anyone having a particularly rough day.
It is now 8/08 and I am still in complete remission. I feel great and I even feel "normal" once again. I returned to my full time job as a horse trainer and could work regular days until about 6 weeks ago when . . . .
I became pregnant with our first child!
There is hope. I know you feel like you are in hell, and frankly, you are. There is no minimizing it. I make no qualms about the fact that it almost killed me to anyone that will listen. But it is able to be beaten!
I always just thought I was a regular person until I saw how strong I became living through Lyme. You are all JUST AS AMAZING. Keep your chin up. It is possible and so worth it.
Much love, Wink9
Posted by adamm (Member # 11910) on :
That's so great to hear! So did you get back to 100% w/out more abx,
or did you go back on for awhile?
Posted by Wink9 (Member # 4516) on :
No, no other treatment. Not that I'm advocating that for everyone. In my case, I think I just needed to do a little additional healing. It just took time.
I am at 100% (If you don't count morning sickness!!! )
Posted by sfcharm (Member # 9392) on :
What a nice story to wake up to today. Congratulations on your pregnancy and best of luck for a healthy future.
After 2 years of treatment I am at 90% health and looking to the future as well.
Barb
Posted by CD57 (Member # 11749) on :
This is just fabulous, and please come back and let us know how you are. Who was your LLMD by the way? And did you only do the 2 months of IV Rocephin? And that's it, the rest were orals?
Posted by A_Caro (Member # 15191) on :
THANK YOU for your story.
I just learned today that I'm babesia positive.
I've been in treatment for 9 months for neuro-lyme (seronegative). It seems like I've gone rather stale in my treatment and so decided to go ahead and fork out the money for a co-infection panel.
I'm not sure if I'm happier than sad. As most lymies would understand... at least we have a name for the jerks that are messing with my body!
I am a little worried about what the next steps of my treatment will be like and the herxes ahead.
Thank you for your message of hope.
Carolyne
Posted by mrs.moosie (Member # 15976) on :
Thank you for coming back to give Hope! Some days it runs rather thin.
My husband and I been dealing with this for just over a year now and I often wonder if anyone ever really gets better. Thank you for being a ray of light!
Bless you and your new little one!
Posted by Dawnee (Member # 15089) on :
Oh Thank You for the inspiration! As a 30 yr old myself, and having had this disease for so long...I really needed to hear it.
Also glad to know about waiting for the IV meds. I also believe that if I were to start strong IV meds right now, it would certainly kill me.
Your experience sounds awful (like demons scratching at your pores... yikes) So glad you came back to share your testimony! Dawnee
Posted by Meg (Member # 22) on :
Hi Wink! Thank you for posting this! Good for you, you worked hard and you benefited from that hard work
I also think you should post this in the Success Story Thread on the General Support Forum.....if you don't this post will fall through the pages and be lost.
Newbies need to hear that abx works and works well! Let me know if I can help you post it there. Posted by Dawnee (Member # 15089) on :
Oh, also wanted to mention that 1.5 yrs ago, I had to have a complete hysterectomy (ovaries included) at the age of 29.
When my GYN found out I have Lyme...she said "no WONDER you had to have a hysterectomy" A year before the hyst. I had to have one of my fallopian tubes removed because it was 3X the normal size. Nobody could explain why.
I had stage 5 endo and had organs stuck to other things... and very large complex cysts on both ovaries. I was a mess.
I have found out that there are a LOT of women with female problems and Lyme. My NON LL gyn attributed it ALL to Lyme.
Dawnee
Posted by AZURE WISH (Member # 804) on :
thank you for sharing and updating your story!
its so good to hear when people leave lyme land and get back to LIFE and living.
Congrats on the baby on the way!
Wishing you continued remission ( and less morning sickness ) Posted by Vermont_Lymie (Member # 9780) on :
Thank you very much for sharing your story! Appreciate the inspiration.
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Ann-OH your emails have helped a lot of us!
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