I am sorry to post this but I was hoping to get some encouragement from anyone that has been treating longer with a similar infection picture.
I got my Fry results back and found that in addition to lyme I have babesia and BOTH forms of ehrichiosis. Also rickettsia (rocky mountain spotted fever bacteria) and a high ANA titer of 1:640. I also tested positive for mycoplasma, high titres of EBV, HHV-6, several forms of coxakie virus, and positive Iggs for parvo and CMV.
BioSet testing also put me at a positive for a parasite schistosoma mansoni and said I had TWO strains of babesia (babesia microti and babesia canis). It also found brucellosis (brucella). BioSet was correct that I had babesia as confirmed by Fry Labs even though Igenex for it was negative.
Since I feel I have practically everything with lyme, I am worried I have bartonella or a bartonella-like organism too (have a weird linear rash) even though it was not confirmed by the specialty testing I did nor BioSet.
On the good side, I don't have any pain or joint issues. My worst symtoms are internal vibrations everywhere and what I call brainfog and more fatigue. I took time off graduate school and also have depression as a result of this.
It's very incapacitating mentally for me to sit at home with this illness and fear for my future. I was a straight-A student all my life, at a top grad school, have a fiancee, and dream job options before this. All I did was study and work before, so I feel a huge loss of my identity now- I know others are going through the same or worse. Now I am so frightened of what the future holds and I worry I may be dependent on others for a long time.
It is constantly on my mind and I have not taken the results of my testing well since it seems I have every possible coinfection and virus reactiation, autoimmune response, rare disease (schisoma, brucella?) working agaist me.
I never even really went hiking or been outdoors much since all I did was read for school and study- nor do I remember any bite or rash. I never knew about lyme or even what a tick was. My best guess is that it was 6-8 months from symptoms (not sure when it began since it happened so gradually) to treatment.
I found an LLMD and am taking 400mg doxy, have been for 6 weeks which I know is not long at all. He is planning to add malarone after babesia was discovered. I have not seen a change in my symptoms really and am not even sure if I herx or herxed yet.
Have people been able to get better with ALL these weird coinfections and problems? I am so worried about the neuro symptoms and vibrations and constant buzzing. My hormones are all out of whack too.
I worry I may go downhill without agressive IV but based on what I read here I doubt my symptom picture is enough for docs to use IV therapy. I know there are no answers with this disease and it's different for each person...
I wonder if I'll start seeing some improvement after touching babesia but I don't even know anymore. Have any of you gotten better generally/neurologiocally after addressing coinfections? Have you felt that was a turning point to affecgt the lyme bacteria?
How do you adress all of these factors? Sorry I'm discouraged right now...I'm going to read some motivational books on hope. Thanks for listening.
-Despin
[ 10. October 2007, 01:28 PM: Message edited by: DesperationIn ]
Posted by bettyg (Member # 6147) on :
despin
wow, that's quite a list of illnesses and co-infections, etc!
i don't have experience with most of what you mentioned, so will let others step forward and fill you in.
sending this up to the top for others experience!
DO NOT GIVE UP! KEEP A SENSE OF HUMOR ALTHOUGH IT IS HARD TO FIND. GO TO GENERAL SUPPORT TO LYMETOO/TUTU'S POST ON LAUGHTER....they should give you a belly laugh or two as you untangle your life of lyme. Posted by Geneal (Member # 10375) on :
I am sorry it took so long for me to get back with you.
Couldn't get on the forum at all yesterday.
Yes you have a chance.
That is a pretty lengthy list of infections, but I only started with Lyme, bart and babesia.
Now I can add in CMV, EBV, and HHV-6.....Who knows what else.
Focus on getting well. Now you know what is wrong and you are under the care of a LLMD,
You can start going after these nasty bugs.
Hope sometimes is a commodity we can't do without.
Just take one day at a time. That is all you can do anyways.
Sending you positive thoughts and healing prayers and the message of hope.
Hugs,
Geneal
Posted by Ann-OH (Member # 2020) on :
Despin, I am sorry you have to go through all this! I think you and I have already been in contact.E-mail me at [email protected]. I will give you my phone # so we can talk. I am nearby.
Ann - OH
Posted by CaliforniaLyme (Member # 7136) on :
WOW- you have EVERYTHING!*)*!! YIKES!!! !*)!*)!!)*!)*!)*!)*!)*!)!)!
I couldn't get on yesterday either!! DespIn, you sound like you are in good hands- your own! You sound articulate, aware and assertive, which you need to be with this illness.
I am glad you are on that Doxy with those Ehrlichiosis positives- I had HME myself... Ehrlichiosis is probably the easiest to get rid of!! You have a lot of infections and it will take time, but with a good LLMD you have half the battle. I hope you can find one or train the doc you've got!!!
We had an ex-land-surveyor-in-New-Jersey in our group who had every TBD known to humankind almost- and he got better*)!*)!)! (And then ended up not doing so well after he got a flu shot!!!! So avoid those IMO*)!) Sincerely,
Posted by Michelle M (Member # 7200) on :
Hey, what a great recommendation for the Fry Lab!!
But more importantly, this paints a great picture of YOU.
It sounds to me like in everything you do, you're a go-getter.
It's going to be tough for you to slow down and put things on hold for a while until you're better. But that's what you must do.
And you will!
Think of how many people there are who go for years undiagnosed or worse -- MISdiagnosed, who just get worse and worse. I'm so glad you're not going to be one of them.
The ehrlichia will be gone in a jiffy.
The babesia meds may possibly cause you to have the mother of all herxes, but perhaps really turn a corner, since that is often what is holding you back much more so than lyme itself.
Read everything you can lay hands on, and be good to yourself. Rest a lot, detox, drink lots of water with lemon. Buy a really good probiotic like Theralac (see website by same name, no, I'm not affiliated) and take one at bedtime to stay ahead of the yeast curve.
Keep in your mind: "This will pass. This is temporary. I am on the path to getting better."
Do not despair. And come here often and post, even if it's just how you're feeling. You're in good hands and have lots of support!!
Michelle
Posted by DesperationIn (Member # 13121) on :
Thanks a lot for the kind responses and encouragement. I only hope that I can get back to normalcy and return to school next year. I am also going to start on IV rocephin- maybe that will help the neuro symptoms. -Despin
Posted by blossom (Member # 13260) on :
Hi: About you wanting to get IV rocephin. It seems from reading postings, most people who get IV either get worse, or any gains vaporize as soon as the IV is stopped, and then they get worse. Also I've heard that IV rocephin causes Borrelia to rapidly go into cyst form.
Given your spectrum of coinfections, maybe it would be good to look at herbal alternatives alongside oral abx? The thing with herbs is that they seem to be very wide spectrum against a multitude of pathogens/parasites/viruses, whereas antibiotics are "a-la-carte", where it seems you need a specific drug to combat a specific pathogen, and many of these drugs like Mep*** are so toxic they often seem to set people back to the point where they have to stop treatment for a few days or weeks.
Look into any of the popular herbal regimens out there as an adjunct to orals. Herbals do work, just do a search on these forums and you will see!
Posted by DesperationIn (Member # 13121) on :
Blossom- thanks for the warning about the IVs. I know about herbs and believe in them as well as alternatives/adjuncts. I am taking the Buhner herbs along with others and plan to continue this.
I want to convince my LLMD to prescribe the cyst buster with the rocephin. My symptom picture is not terrible- no joint pain. Mainly fatigue and neuropathy and brain fog. Rocephin crosses the BBB so I hope it will help with that and enable me to regain enougbh confidence to return to school and have a semblance of my previous life.
I have a lot of hope for the IV and have been reading many of the posts on here about rocephin and others' experience.
It does help many to turn a corner and to significantly diminish neurological symptoms. I will continue treating coinfections along side and afterwards. I am hoping to be on the success story post someday- boy, will that be inspiring to everyone since I tested positive for so many things.
Thanks for all the encouragement.
-Despin
Posted by lymednva (Member # 9098) on :
Despin, look at this recent post about Dr. Fallon's just released study on long-term IV ABX.
Scroll down the page to Tincup's post about it. Long-term IV abx CAN help you!
Hang in there! Posted by DesperationIn (Member # 13121) on :
Yeah- the study makes me somewhat hopeful. Maybe the rocephin will bring down the bacterial load and neuro symptoms. I just feel crappy today and don't really know where to run or what to do. -Despin
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