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» LymeNet Flash » Questions and Discussion » General Support » My Lyme a year later

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Author Topic: My Lyme a year later
JunkYardWily
LymeNet Contributor
Member # 24271

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today is my 32nd birthday and my one year anniversary of having lyme. last year at this time i was in my third week of frightening neurological symptoms for which i had no clue what was causing them. today im very slightly better yet have much less hope than then.

i started treatment mid october or so and have been treating and seeing a llmd ever since. i have had very modest gains. some neuro stuff is gone and has been for a while but the sick, weak, focked up feeling is with me most of the time. i woke up this morning feeling like i had spent all night drinking.

my last visit to my dr was very disheartening. every previous time i would see him he would act as if this was the last visit i would be making to see him. this previous time he asked me why i thought i wasnt getting better. i spent $2000 on new testing. i just received the test results back from full panels from babisia and bart from igenex. my heart sank as both came back negative. i was hoping that not adequately treating one of those co infections would be the reason im not seeing noticeable gains. all the other tests came back normal, like usual. like the ID dr told me 6 months ago "your a very healthy guy"

my life is functional. i know many with lyme are not this lucky. i have kept my job and am able to do many social things. my problem is my love for life has gone. i feel so poorly so often that when i do something with others its not enjoyable at all and i just want to be home. this isnt me. i had a love for life. i never use to fear being sick, now im worried all the time.

i have tried 10 or so different abx. i have tried 40 or so supplements. i have eliminated sugar and simple carbs from my diet. my dr has me on lower than most others does of abx. for example im on 1g amoxi 4x a day with 2 augmentins as well. i can only get up to 1g 2x day with 2 augementin before i crash. i often have a very hard time taking the does he wants me to because i become so sick. he tells me the does isnt important, just if im getting better on it. i would be 100% non functional at the doses ive read on here. i would lose my business and be unable to pay for any futher medical treatment and would have no where to live.

sorry for the long post and the complaining. many others here are much worse off. im just very frustrated. a year ago i had lyme and hope. now just lyme. i remember when people would tell me for someone like me it likely a year to get significantly better. i remember thinking "man ill never last a year, that will be horrible". if someone told me id be better in 3 more years i would jump for joy.

thanks for listening.
jesse

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

Posts: 436 | From Kansas City | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
John S
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Well Wily,

I've found that I do better on really high doses. The problem is finding a doctor willing to give them to you.

It's been over two years since I became ill. I sympathize with you.

Unfortunately, we are Tuskeegee.

Posts: 743 | From New York | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
sprite8
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Member # 28259

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Hi jesse!

Happy Birthday!

i've been sick for 10 - 15,20 yrs noe. At first I was ignored,then given excuses, then all in my head and by the way"you look good,healthy etc.

then came arthits,fibromyalgia,chronic fatigue, then finally lyme!
west blot igenex bands; igg +41, +/- 58 & 66.
igm; + 39 and31,34,41,58,66,93 all+/-.

seronegative! finally a lyme literate fibro dr.told me I had lyme and sent me to a llmd.
treated w/many oral atibiotics as well as 1 iv.

After a similar episode w/ my llmd. I stopped going thinking there was nothing more he could do for me. I thought I just had fibro and had to live with it. went to fibromyalgia clinic in Boston. They closed that office and because of finances I didn't continue.

Now I believe I have chronic lyme and after much research and tears, I am hoping to get an appt. with another llmd and start from square one. again (sigh)!

I have alot of neuropsych symptoms including depression and fell alot like you.

Don't give up!

Isaiah 43:2 says," When you pass through the waters, I will be with you; and through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you."


This has helped me. I hope it helps you!

--------------------
sprite8

Posts: 38 | From MA | Registered: Sep 2010  |  IP: Logged | Report this post to a Moderator
missing
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How long did you feel sick before you started treating Lyme?

I have been in treatment for one year , and I am exactly like you.

Not much better, and almost bedridden now.

I am not sure if I am worse from the meds./herx?

or if I am worse because I have never had any I.V. treatments.

I am grateful that I am getting some type of treatment.

I have started taking Cymbalta to help with the pain and sleep issues. It is helping a little bit to help me function, but it takes a month to see the full effect of this med.

Plus I am taking oral antibiotics and mepron.

My pain has been torture and at times I scream from pain. There is no way that I would be able to go out to work, fortunately I can work a little from home and have a husband who is able to help.

I feel bad for you.

I really sick for 3 years before I found treatment and every day was a real struggle.

Then my body just completely stopped and gave out!

I went to emergency twice but they found nothing and sent me home.

I was lucky to find a LLMD who is helping me now.

Have you watched "Under Our Skin"? That documentary helped me alot.

--------------------
I am not a doctor. I have no clue.

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
JunkYardWily
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Member # 24271

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John S-how do i get up to the highest doses if i get so sick on the med doses?

sprite-thanks for the verse. it helped already.

missin-i was sick for a couple of weeks before i started treatment. this is what is so frustrating for me. i got fairly quick treatment, im young (kind of [Smile] ), and have never had any other health conditions and cant seem to improve.

yes ive seen under our skin. ive read everything i can. ive been to many drs. i am no where near you. i cant imagine having pain that bad. i just feel horrible half the time. its not that bad. some people are dying.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

Posts: 436 | From Kansas City | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
missing
LymeNet Contributor
Member # 22437

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my llmd says to work my way up more slowly to higher doses,

if that doesn't work they are willing to switch the medication for me,

A lot of meds had side effects that bother me, but i stuck it out and they aren't as bad now.

What made things worse for me, was working out at the gym, especially aerobics.

I didn't know that I had Lyme yet and I was training almost 40 hours per week. My gym wanted to hire me as an instructor.

My body couldn't handle it and that made my Lyme worse.

I am the type of person that doesn't stay home when they are sick. With Lyme a person needs to rest as much as possible.

This year, while on treatment, I did a lot of yard work in the extreme heat, then I had a relapse.

I also got confused
and thought that I was supposed to quit
some medication and start another,

when actually I wasn't suppossed
to quit it at all.

aaakkk! So now I am going through
a major herx and / or a major relapse.

So my advice would be to
rest as much as you can.

I know you need to work,
but if it were me I would
just forget about a social life,
hobbies, etc. until you are better.

You sound like where I was at about 2 years ago.

Instictively, I put an electric blanket
on my bed and turned it up
full crank every night
and wore heavy sweaters to bed.

Apparantly the spirochetes hate heat, and I hadn't even known at the time that I had Lyme!

Cool hey!?

I also started to eat mostly
just fruit and vegetables,
especially fresh cranberries, unsweetened.
They taste like mini-crab apples and are a natural antibiotic.

I truly believe that I didn't get as sick
as some from all that heat and from
the weight training and hot yoga that I did.

IT was the aerobics that I should have avoided.

Are you depressed? Are you sleeping well?

Have you been tested and treated for any co-infections?


[Smile] [Smile] [Smile] [Smile]

--------------------
I am not a doctor. I have no clue.

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
John S
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I just take them Willy. I don't know what to tell you. You might find it easier to take higher doses of a different med? It might not even work for you. I would look at Burrascano's Guidelines.

Do not take this as medical advice =)

Posts: 743 | From New York | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
missing
LymeNet Contributor
Member # 22437

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I also heard a LLMD doctor

say once, that when she had

Lyme disease herself she

had felt crappy the whole time

during treatment.

She said she herxed every single

day of her treatment until she was

done her treatment.

I thought that might give you

some insight as well.

Hang in there!

PM me anytime if you need.

I read those Chicken Soup books
to motivate me through this.

[Smile] [Smile] [Smile] [Smile]

--------------------
I am not a doctor. I have no clue.

Posts: 606 | From somewhere out there | Registered: Sep 2009  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

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Hey Jesse,

Happy Birthday to a fellow Libra. Mine is the 6th of Oct. Just wanted to say I hear your frustration.

After 4 yrs of abx, I started antiparasitic herbs and salt/c. They both saved my life. Parasites and worms can be a MAJOR part of Lyme disease.

I urge you to look into this possibility as to why you are not getting better. Do a search on here by typing parasites into the search bar at the top.

Most LLMDs are just not familiar with the parasite angle. You can get better with the right approach.

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546

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Junkyard:
I can honestly say that I did not start to feel better & gain energy until I started chiropractic treatment through a Maximized Living Doctor. Amazingly, I had been on ABX for 4 weeks, was still herxing one of those long, slow one's that keep your legs so heavy.

Then, after about 5-6 treatments: Whamo!! My energy began to return! Slowly, I've regained total energy & stamina over about 2 months time. In addition, I took off 3 weeks from work, which also helped tremendously.

I never stopped taking my ABX. I also started Lexapro (anti-anxiety/depressant) & a brain vitamin prescribed by my LLPA called Cerofolin. But I'm convinced it was the chiropractic treatment that gave me the breakthrough to take the pressure off the nervous system so my body can get to work healing itself, with the aid of my meds.

I hope you are seeing a real LLMD. They know what they are doing. You are in Kansas, which is close to Dr. J & the Hansa Center. They follow a protocol very similar to Maximized LIving, very very similar. Holistic....

The link to find out if there is a ML Doc near you is here: www.maximizedliving.com. Don't give up the fight...there is light at the end of the tunnel. Also, I'll mention, I was very early stage Lyme, only contracted it in May of 2010. So you see, it's very hard to get rid of.

Good luck to you, may God bless you.

--------------------
Early Disseminated LD- 2010.
Currently doing acupuncture and yoga.
Negative Igenex (IND & Pos Bands)
ISSUES AFTER: Tendonitis, letter reversal, Low immune system.
PREVENTION:SaltC,Iodine,Humaworm,
Chiropractic.

Posts: 1013 | From In a van down by the river. | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
RESOLVED.
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Member # 24991

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Junkyard, the first thing that comes to mind when I read your post (after I say a prayer for your peace) is to tell you to try to forget the date. It's hard to do, I know. When I first got sick, I actually believed that 3-4 weeks of Doxy would do the trick. HA!

My one year mark is next month, and I say, "I'm ALIVE!!!" That's what I try to be thankful for. Just try to take it day by day and forget the negative anniversarys.

As far as treatment goes, I can't comment on doses and stuff, but maybe another LLMD is a consideration? I know this disease(s) is bankrupting most of us, but maybe another LLMD's opinion might help change the direction for you.

I wish you the best,try to stay positive.

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Misfit
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You've already received great advice that I can't expand on.

Just wanted to let you know that there's still hope!!

You might have Lyme, but you still have to have hope. Things WILL get better. Just hang in there.

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Lymetoo
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I don't know if this helps any... but I didn't feel any better for the first 18-24 months. After 2 yrs, I felt maybe I was getting somewhere.

Took another two years to get well.

Sure hope you can turn that corner SOON!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95350 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
JunkYardWily
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Member # 24271

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thanks for the responses. i had a very nice birthday. my girlfriend took me out for an awesome dinner and i felt about an 8 out of 10 all day. ill try to enjoy it while it lasts because i always end up crashing. ill try to be more patient. i tend to be pretty negative when im feeling so sick.

i read everyone's post and will try some of the things i saw.

--------------------
sick since 9-09
igg, 18,23,41 reactive
igm, 41 reactive

Posts: 436 | From Kansas City | Registered: Jan 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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That, to me, was the hardest part about having Lyme. The ups and DOWNS.... and when the downs come, you think that is IT.

You think there is no UP coming.

 -

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95350 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
just don
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Junkyard,

what current symptoms are you having? maybe others can help sort it out.

if you have bart there is the doc from North Carolina, I think, that is a much better test. More strains tested for and more cases found.

He was actually a vet who discovered bart in like 85% of cows there and started testing human vets who were sick also.

R day will come had the link a couple weeks ago HERE.

You have to peel the lyme onion one skin at a time!!!!

--------------------
just don

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