posted
3 years, $20,000+, 6 Lyme Docs, 3 states, dozens of meds, 1 home (sold, not foreclosed, thankfully), 1 job - all lost due to chronic lyme.
I was just told by another Lyme doc this week that he's not sure he'll ever be able to get me off disability. That's 3 of 6 who have told me that. In addition, he diagnosed me with fibromyalgia and dysautonomia - yeah, those spots did really hurt when he pressed, and I did try to pass out on standing, so it seems true.
But, my question is, is there any hope of me getting well? I've been on so many drugs (many IV, paid for out of my own pocket), and seen so many doctors, but I am still completely disabled. I can't drive, visit friends, shop, or even keep my house clean or myself dressed. I'm too tired, stupid, and in pain to handle all that, except in tiny, tiny doses. This round is even worse than when I had it 10 years ago because I am much more useless, and drugs haven't seemed to make much difference.
Is there truly a way to get someone like me into remission, or do I just give up & "retire" somewhere cheap for the next few decades?
Posts: 168 | From Delaware | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
YES absolutely there is hope!
Have you been treated for all coinfections and considered if you have developed a yeast overgrowth issue, food allergies (like to gluten)etc.
Tick borne diseases are complicated and sometimes it takes time/energy to sort out exactly whats going on...much more than we would like.
when improvements in lyme disease arent made or maintained it seems that a coinfection may be present.
Do you have a llmd now? Does he look beyond the lyme (does he treat coinfections etc)? if not I personally would not consider him very lyme literate.
This is just the opinion of a fellow lyme/babs patient.
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
yes, there is hope! i have dysautonomia and fm among my dx's. i have been in treatment for lyme for two years, ill for over 40.
i am seeing improvement in things like joint pain, and more importantly to me, because it was so severe, and it makes me feel more normal, in my dysautonomia.
i agree with azure wish that you need to be sure your llmd looks at co infections and not just lyme. some say you will never beat the lyme if you don't treat the co-infections.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
Yes, I had been diagnosed with Erlichia, and treated with Doxycycline. They suspected I had Babesia and used Malarone and maybe Mepron or Tindamax, and they've tested me for others. I am on Fluconazole for the yeast overgrowth. I have a lot of trouble with food - one of my primary issues is GI and barely being able to eat/keep food down. It got so bad that I vomited for 6 weeks and lost 15-20 pounds until I was put on Zofran.
The list of meds I've been on is as long as my arm, and I've lost track, not that my record keeping was stellar to begin with - another Lyme issue, since I used to be hyper organized.
I started searching for a new doc after my vomiting episode, since it seems I'm maybe not getting the overall system support I need (GI, sleep, etc.). But, that turned out more discouraging with my latest discussion about how I may never get off disability.
I feel dead-ended, so I appreciate any thoughts. I'm stubborn and have kept searching for solutions, but after 3 years, my stubborness is really being tested.
Posts: 168 | From Delaware | Registered: Aug 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Babs can be hard to kill. You can look at posts or ask how long people have had to treat it - or how long they have been treating it.
I think for me the presense of babs has kept me from getting well with the lyme.
Do you think maybe you didnt treat the babs enuff?
Alot of us that come on chat have babs along with the the lyme.
What was the vomitting from? I have gastroparesis (delayed stomach emptying) which has caused me nausea , vomiting, pain.
I hope this makes sense its 4:40 and although exhausted i cant sleep so i am hoping somehow i made this coherent despite my sore eye and insomnia.
posted
"long enough" is hard to say. But I was on Mepron for at least 4-6 months and Malarone for 6-10 months. IV Doxy 4 months. IV Zith for at least 8 months, blah, blah. It seems like it should have worked, if that was the problem.
I wish I knew what was with the vomiting. It was a truly scary experience and the first time I ever thought it was possible to actually die from Lyme.
My current quest for a new doctor and new inspiration came from that, since he wasn't a lot of help in fixing it, until I was completely anorexic and gave me the chemo anti-nausea drug, and he never really looked into why. He's just sorta shrugged it off. And I still have problems with food, though I am not throwing up again.
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
Btw Azure, I know the feeling on insomnia. I have finally found some relief by taking 7.5 mg of Melatonin, which gets me to sleep sometime between 11 and 3 am instead of 3 and 8 am. I hope you find something that works for you too. Insomnia seems to make everything else worse.
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
Checked my records. Bart test in the fall of 2006 was negative. thanks for the question though.
Posts: 168 | From Delaware | Registered: Aug 2005
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
There is hope. It does take time.
HOping you have a good LLMD that is a member of ILADS and goes to the conferences.
Hoping you are plugged into your local state support group.
And it is good you are here.
You will be able to hear about stories from people who have battled this a long time and have regained most of their life back and are working and active once again.
You are not alone.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Thanks all for your input. I already do a lot of that, and I am searching for another doc.
I have cut my activity to virtually nothing. I do whatever chore MUST be done, and not much more. I try to move around the house a little as my exercise. I did try PT for a bit, but it exhausted me to go out.
I mostly read (light fiction, since that's all my brain can handle) and play World of Warcraft. I play with papers, tossing them around my office, but never quite filing or answering them. And I order takeout, since I can't cook.
Not being able to eat well or sleep well has certainly delayed my recovery significantly. But, I take lots of acidophilus - yeah, when I remember, and I am taking a sleep aid that finally works without making me vomit. Though, I still wake up a dozen or more times per night, and nap during the day.
Unfortunately, I still have the same small amount of energy, low brain power, etc. I thought getting to sleep would make a bigger difference.
I'm searching for the BIG answer (new doctor, most likely), but also the little answers.
My husband is truly awesome, and I know his support has made the difference in my not spiraling into severe depression.
What other physical support mechanisms have helped? I've tried Bio-set, craniosacral therapy, acupuncture (though years ago), Physical therapy, all the various Abx, tons of random supplements, heavy metal detox, including removing my fillings.
Despite all that, I am still just as sick as when I went on disability 3 years ago. The 2 real improvements I've had are: 1) I don't need a cane for balance - I can just use a wall and 2) I am no longer taking Neurontin for pain. Yet, I am physically capable of less, and my PT said I am dramatically weaker than other people my age.
Thanks for the input & hope.
Posts: 168 | From Delaware | Registered: Aug 2005
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quote:Originally posted by OptiMisTick: Bartonella testing catches only 2 or 3 of the 12 or 13 strains of Bartonella that we are concerned with, for those who think A NEGATIVE for Bartonella means a Negative!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I don't know where you live and if you know about him but there's a very good doctor i don't know where in USA'(sorry nor clear but...) Dr,James L. Shaller, look on the web, maby you already know...His site is very interesting, and you can even have a 5 min chat with him, you write your story, he call u and help u the best as he can in 5 minutes. Reference, consels,diet...He's an expert.He treated his entire family and very know how to treat...I know i'm just new in lyme word, but it's someone who talked to me about him and he even treat her daugter that she infected... He seems one of the best! Aniway, you'll see but there's even books on his website! Ok good luck, i'm sorry for u, and pray for u too. Fannie
-------------------- Lyme-co infections Posts: 27 | From Canada | Registered: May 2008
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quote:little red dots that appear out of nowhere, as just one little symptom.
Could you tell me some more about these dots. I have them, they are dark red, sometimes in a pair, and raised but very small.
Posts: 148 | From europe | Registered: Apr 2008
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adamm
Unregistered
posted
I have small red dot all over my arms, and am + for
posted
The red dots is call petechia, i think its what he or she talk about. Its like a blood dot. It also appear on me. Bartolenna also do kind of papule for some, i had them on fall, still there, but lee swollen...
-------------------- Lyme-co infections Posts: 27 | From Canada | Registered: May 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Has a PICC line with IV Vancomycin and Flagyl combined with an extracellular treatment like IM Bicillin, Penicillin, Amoxycillin been considered?
When a case is highly resistent, tossing Vanco at it, Bicillin, and then not long after, Bactrim and Levaquin -- this brutal routine seems to help.
This is about as brutal as it gets, so I wouldn't consider this unless there was absolutely no other way and treatment failure was taking place.
Consult your physicians, that's all I can offer. If you need help finding someone, then e-mail me [email protected] I have a lot of options for you.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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I play with papers, tossing them around my office, but never quite filing or answering them. And I order takeout, since I can't cook.
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