posted
My name is Joe and I live in Albuquerque, New Mexico. In March, 2008, I went to Florida and was bitten by a tick.
I returned home in April and saw the bullseye rash but didn't know what it was.
My neck became stiff, my knee swelled up and in late April I went to the ER because I thought I was having a stroke.
In June, a large egg-shaped growth appeared on the side of my foot. I began to see yellow and blue spots in front of my eyes.
In July, my hands would tingle and an electric bolt would come out of my leg, travel up my body and dis-connect my brain.
Doctor's thought I had a brain tumor, MS or vasculitis. Objects in my vision began to flicker back and forth, rapidly.
In desperation, I googled flickering vision and ended up on a Lyme disease site with the picture of the bullseye rash.
In late August, a doctor prescribed 200mg doxicycline. It worked for about a week but then I was back in the ER. I asked another doctor for a larger dose but they would not do it.
In late September, my foot swelled up like a football and I was back in the ER. They started Rocephin IV October 1st. My original doctor left town and the other doctors I saw did not believe I had Lyme.
I got better in October on the Rocephin but it is gradual. The doctors wanted to D/C the Rochepin IV October 15th. I had to contact a doctor 250 miles away to continue the prescription. I live in fear of having my rocephin taken away.
Today is 11/10/2008 and I am getting better but wonder if my symtoms will ever completely go away. My doctor in southern New Mexico is open to imput about how to treat the disease.
How long have any of you been on a Rocephin IV?
How long does it take to get it out of your eyes?
Is there any thing else to take to help speed the recovery?
Can you really be cured of this chonic Lyme disease or do you have it forever?
Please help me; I want to live again.
Posts: 54 | From New Mexico | Registered: Nov 2008
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posted
I'm sorry to say that once it has gotten into your system you will never be rid of Lyme. But take heart, it can be controlled, and there are many people on these boards that have no symptoms at all.
You may be symptomless for long periods of time, but you have to realize that it is in remission and not active in your system. There is always a chance that it becomes active again.
Some people say that a car accident caused them to relapse, others say they got sick and relapsed, others say they relapsed just doing their every day things.
Its a very mysterious disease, and I don't think anyone fully understands it to this day. (my opinion).
The bottom line is, you may never completely get rid of lyme, but you can get it under control so you have a normal life.
Posts: 158 | From Santa Monica | Registered: May 2007
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Make sure you see a Lyme Literate physician. There's lots of people who can private message you with that information if you post an inquiry.
Yes, you can recover from Lyme with longterm antibiotics. The sooner you get treated, the sooner you will recover. Doxycyline 200 mg twice daily is probably the first mode of attack.
Although you feel like death, you can get better. I went back to work in August at 85% functioning. Yes, I need more sleep. I won't be running any marathons soon. You have a good chance of getting your life back. Don't experiment. See a Lyme physician as soon as possible.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I havent been cured. Im at a loss.
I just know what foods to stay away from. Thats all.
I dont know what to do.
Posts: 2905 | From New England | Registered: Sep 2004
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posted
I'm glad you are getting the IVs. Sounds like they are helping you alot. I believe that the ILADs doctors are willing to help coach doctors who want to learn more. Hopefully, someone can chime in with more information about that.
It might be a good idea to make an appointment with an LLMD. Sounds like you've found someone who is working with you but you might need the input from someone with more experience. Perhaps you can see an LLMD for recommendations and your other doctor can help you get the treatment in your area.
As far as cured, many here feel that they put the disease in remission. Others treat for quite a while and don't reach remission but are definitely in a better place than they were before they started treatment. Some unfortunately haven't found the magic formula and are struggling to find something that works.
The good news is you have shown a response to the antibiotics which is a good indication that antibiotics will work well for you.
Posts: 984 | From San Diego | Registered: Nov 2006
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
I don't believe once you have had it long term there is a cure. You can hope for remission, however, and for a fairly good quality of life at that.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Don't listen to all of these naysayers. Of course you are going to get all the negative points of view on here because you will not find any cured lymies posting anymore.
They are busy forgetting about there terrible ordeal and enjoying life. I personally never want to here the damn word again when this is all said and done and neither will you I would imagine.
Get to a good LLMD and get the proper follow up treatment you need to knock the rest of those suckers outta there. Ientify co-infections and get them treated. It might take a while but you will get there an you will be a stronger and better person for it.
-------------------- Pos BB and Bart(Q & H IGG pos) Began treat 1 year after start of illness. Diagnosed Feb 2007. Posts: 648 | From Ireland | Registered: Jan 2007
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
I was just bopping around on some sites today and ran across this clinic in 'Scottsdale' Ar.
that had a GOOD presentation of treating lyme,,
if you believed the lady that said they helped her get well.
Thats not real far,,,can you go there,they MAY treat yu better.
Would wish for feedback from people from that area.
People fom Phoenix/ scottsdale please contact me with your opinions of same???
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Agree with NMN. You can get rid of this in time and be done with it. I know people who have been completely cured. My LLMD uses the word cure not remission. So go for the cure! It is true that those that are cured are long gone from here getting on with their lives.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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ByronSBell 2007
Unregistered
posted
I know several people with the worst chronic lyme that have been cured or atleast in remission for good and they have kept it that way 20+ years now...
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hello,
You can definitely get better.
I had very late stage lyme, and lots of debilitating neuro and physical symptoms. I am much better now after over 2 years of antibiotics. Just realize that if you have had lyme for a while, it can take more than a few months of abx to get that long-term remission or cure.
I am now back to working fulltime, though I still have some symptoms as I have not treated babesia yet, which blood tests show that I have. Co-infections can make treatment last longer.
Posts: 2557 | From home | Registered: Aug 2006
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just don
Frequent Contributor (1K+ posts)
Member # 1129
posted
Cancel that notice to see the place in scottsdale,,,found out its overpriced and overrated.
Unless your blood flows green from money,and you have NO other place of hope.
Sounds like they use primarily IV treatments which add up quickly. Not sure but they MAY not ttreat it long enough.
nice to 'try' orals and SEE what happens with those.
MOST important thing to do is find a LLMD on YOUR wavelength!!! try posting for one in seeking a doc page,,,please??
ordinary docs just arent gonna 'get- 'er- done' for this multifaced monster!!!Beliefs of--just don--
-------------------- just don Posts: 4548 | From Middle of midwest | Registered: May 2001
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posted
Hey even if you go see an LLMD, give that doctor in New Mexico ILADS information at www.ilads.org He sounds like he might be interested in doing training with ILADS and becoming and LLMD himself. The more doctors get trained the better.
Posts: 499 | From Indiana | Registered: Oct 2007
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