posted
While I had my first lyme dx in 1997, after which I had the vaccine, a subsequest dx w/ ehrlichiosis, THIS particular bout has lasted a year now. Previously I had early detection and treatment and felt better in about a month and everything went back to normal.
This time, I started with a general malaise, found out my PCP had moved out of state, had to try and find a new doctor, and by the time i finally received a positive western blot and treatment we had gone from May to September. I got 3 weeks of doxy and it was too little too late.
Then I couldn't find anyone to help me beyond IDSA/CDC protocol when my symptoms continued after the doxy was finished. I had one doctor tell me all i needed to do was exercise and I would feel better, and that she would never consider chronic lyme disease in a patient because it was too controversial.
I finally started oral doxy in the beginning of March when my symptoms had become so bad (like the worst flu ever, all the time) i could no longer work and had to take a leave of absence. The doxy made me exquisitely nauseous, so i was switched to doryx which helped the nausea, but has done virtually nothing for my symptoms. I am fine as long as I do nothing, which isn't hard because most days I am so tired I could sleep all day. But if I have to do anything, it starts up the flu like symptoms again, and leaves me completely exhausted. I run a fever off and on all the time for no apparent reason.
I was also taking artemesinin and grapefruit seed extract, but i had to stop taking them recently for two weeks prior to a colonoscopy and found that the bleeding i was having the colonoscopy to investigate completely stopped while off the supplements.
Doc also has me on hormones because I have some low levels, as well as vitamin D and zinc.
My doctor is not officially an LLD, but ~is~ literate in lyme, and makes frequent consultations with her colleague who is one. We've also had neuropsych testing and an MRI done to try and quantify what's going on with my cognitive impairment. I also have balance issues, some kind of inner ear something going on, i get pooping noises in my ear, as well as jaw pain, TMJ, and aching in the joints of my hands, wrists, and knees.
We're talking abt maybe IV next, but i definitely am interested in adding flagyl and diflucan for the cyst busting, and reproductive inhibition properties. too tired to do much exercise ... but trying to watch carbs and sugar, and have eliminated caffeine and rest rest rest.
I know people have been at this much longer than my year, but I am getting to the point where I am getting really scared that I may never get better. i feel like the longer i am sick, the less chance i have of getting better.
I guess I just needed to reach out because this fear is starting to overwhelm me. Thanks for listening.
Posts: 13 | From Connecticut | Registered: Dec 2009
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
EE,
If it's not too much trouble, would you be able to post this in Medical? You might get more responses.
Don't dispair! Hope is not lost!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
"she would never consider chronic lyme disease in a patient because it was too controversial."
Gosh, how dare we have the audacity to catch a controversial disease? Remind me to get a more acceptable one next time.
I have had lots of struggles with the nausea from doxy. My doc gave me carafate to take 4 times a day, and it has mostly conquered that. It's great not to have to fight that for several hours every morning.
People who have been sick much longer than you have gotten better, so you can get better. No matter how bad it looks to you at any given moment, hang onto that faith that you WILL get better, and then keep going forward with the things you have to do to take care of yourself.
I went through several months of sheer terror after I realized what I had, but I am past that now. It's a scary disease to have.
Remember that Lyme and any coinfections you might have affect your mood and emotions. It's like they try on purpose to make you despair and give up. Don't give in to them.
A lot of the despairing feeling may be chemical and there may be something you could take to help it, or could be a side effect of some drug that will go away when you stop it.
Find people and things that give you strength to go on, and know that you are going to get better. The only way you might not is if you despair and give up on the treatment.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
The doc is the key to getting rid of this disease. I can't emphasize that enough. The doc is the key.
I tell people to only go to a doc who they know has gotten rid of lyme for at least 3 people. The reason is that lots of doctors treat lyme, but most of them don't know enough to get rid of it for people.
I experienced it.
It wasn't until I switched to a good lyme doc that I got well. It was my 3rd lyme doc that got me well.
I spent 2 years with a doc who didn't know enough to cure me. When I got to my 3rd doc, he told me he got all of that doc's patients! Imagine that.
So, based on what you have said about your doc, consider moving up the food chain to a much, much better doc.
But, first inquire of support groups and similar places to find out the doc who is getting people well. That is the doc you want.
It will probably cost more to go to that doc than the one you have, but that is the best bet for getting your life back.
I had undiagnosed lyme disease for about 10 years before I finally found out it was lyme. And now, it has been 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life.
The doc that got me well followed the Burrascano protocol. So, I tell everyone to go to a Burrascano type doc. Where I live there are at least 2 of them. One of them has gotten rid of lyme for all of my friends for the last 6 years. That's why I believe in the Burrascano protocol.
Ask the lyme support groups in your state and surrounding states for who follows this protocol. A careful search for a good doctor is well worth the time.
I wish you the best.
Posts: 9931 | From Maryland | Registered: Dec 2007
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My doc is very hardcore Burrascano, but she is open to new information and options, which is something i think is very important, especially as we're (everyone) still very much in a learning stage regarding lyme and its treatment.
I've only been working with this doctor for a few months but I feel confident in her knowledge and commitment to getting me well, no matter what it takes.
Now the neuropsych i recently saw, he's another story. Supposedly a big Lyme expert, but has a lot of preconceived notions and gave me an evaluation that basically said my symptoms were all in my head.
Very frustrating.
Posts: 13 | From Connecticut | Registered: Dec 2009
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posted
Thank all that is good that i only had to see him for this eval, of course now i am all freaking out abt whether or not his report will mess with my disability, i have 6 mos short term from my job ...
silly me, thought i could get better in that time i hope i can get a second opinion ... i'm feeling really wrung out at the moment tho and the prospect of doing anything besides sitting on this couch is overwhelming.
i just started a new antibiotic yesterday. (doryx --> azithromycin) I am hoping that is why i am feeling so crappy today.
i never thought i would be wishing to feel like crap (herx) just so i know the meds are working.
Thanks for the encouragement Lymetoo. I SOOOO need it right abt now.
Posts: 13 | From Connecticut | Registered: Dec 2009
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posted
Yeah, doryx is good! I do so hope the evaluation will not make things worse for you.
Get over that herx!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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MDW005
Frequent Contributor (1K+ posts)
Member # 22706
posted
EEvans,
Sorry I missed your post.
Hey, you made it a year....thats progress. If you made it one year, whats another day? Just keep telling yourself one more day. It will get better one day. I'm wishing you well.
Diane
-------------------- God's promises mean you always have something wonderful to look forward to. Posts: 2150 | From Georgia | Registered: Oct 2009
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