posted
Hello Everyone... I've visited this site often over the past couple of years because I've had unexplained problems with no clear answers from numerous doctors that I've seen. I'm confused and frustrated and could really use the advice from some of those who have experienced the long term effects of lyme...
Here is a brief history: I was bit about five years ago, had the rash and treated for about three weeks. About two years later, I started having jabbing, stabbing, tingling under my arms, throughout my chest and off and on fogginess since then. My reflexes are off, my organinzational skills are off, my house is a mess-I can't seem to get it together. I've had major panic attacks with fear of some terminal illness and often have fatigue. I have pain that comes and goes through the back of my head and right arm where I was bit.
I saw a LLMD who treated me with oral abx for a summer and they increased my symptoms and there was pain in areas the I had never had before. By the Fall, my brain fog was so bad that I had to stop because I feared the I wouldn't be able to care for my children properly. I stopped the abx and started anti deperessents at the advice of my general doctor because she thought my "problems" were possibly stress related. The Anti depressents helped with the panic attacks, but have not stopped any of the other symptoms, so I have waited in hopes that all these issues would pass...
Here I am five years after the tick bite still not feeling right, so my husband and I decided that it might be wise to be evaluated at Columbia because I was looking for an impartial, highly regarded doctor to help me figure out what was happening. After cognitive testing, a full run of blood work and a SPECT scan and it was my hope that I would finally get a concrete answer after being fully evaluated so that I could move forward with treatment or whatever I needed to do to get better.
Afew weeks later I received the results that my bloodwork came back equivocal for lyme, my SPECT scan did show "moderate, global, cortical hyoperfusion with heterogeneity consistent with encephalitis or vasculitis from infection such as lyme". Some of the memory testing came back showing slow reaction time and memory loss consistent with lyme disease.
After all this testing the doctor seems to think that it is probably lyme but says that if I'm not feeling that bad he would wait for treatment...I'm confused-isn't time of the essence when we're dealing with lyme??? I'd rather get treatment now than when I'm unable to function and care for my family anymore and just because I look fine and my body is still functioning, my head is a mess. I worry about driving a vehicle and being alert to care for my children...
I'm hoping to get this report and take it to my doctor to request treating me with 6 weeks of IV treatment and then oral abx following that. I don't want to wait to get worse...I have a positive test from Igenex and this spect scan to back me up-do you think it will help me with getting some understanding from my general md and my insurance? I really could use some advice on this matter...have any of you been in my shoes? Thanks so much for listening... Kim
Posts: 69 | From PA | Registered: Aug 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Hi Kim,
You need to get in with a Lyme-Literate (LLMD) doctor. Time is important - though at this point, it sounds like you already have chronic Lyme. So, it will not be easy to get rid of it, but it can be done. You just don't want to wait and continue to have the bugs do more damage to your body and your immune system, etc.
If you have a positive Igenex test and clinical symptons, you should be treated. BTW, the worsening of symptoms you mentioned with earlier treatment is expected - it means you have bugs that are being killed off in most cases.
Good luck
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Kim, Hi!
I could really relate to your post, because, like you, I had a rash and was initially treated with about 10 days of oral abx.
That was almost 10 years ago.
I had a lot of symptoms over the next few years but never would have associated them with Lyme Disease. Nor did any of the 13 "specialists" I saw. Through the whole period, I got more and more tired and more cognitively and emotionally affected.
Thanks to an acupuncturist and this board, I was finally able to get to a LLMD and on abx. That was in June. Like Scott said, I got quite a bit worse before I started getting better. I also had new symptoms surface. The first two months on abx were literally hellish!
Finally, things began to improve. It's now been 7 months of abx and supplements. I still work on a part time basis, but I certainly don't feel great.
I have hope, though. And I'd definitely been losing that prior to seeing the LLMD. By the way, my LLMD is a proponent of oral abx, rather than IVs at the staret. It seems to depend on the doctor...
I'm glad you've found your way to this board. Hopefully, you'll be able to get to a LLMD so you can get the best treatment. Time really is important here. The longer this disease runs rampant, the more damage it seems to do.
Keep us posted, Kim!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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WildCondor
Unregistered
posted
Hello and welcome,
Sounds like you need to get to a LLMD as soon as possible. It does sound like you already have chronic Lyme, and were never treated long enough. Don't panic, most of us here were at one time in the same situation. Once you get to a Lyme doctor you will be well on your way to getting well. Please do NOT expect to get 6 weeks of treatment. There is no gold standard for treatment of this disease. Everybody's needs are different, so the treatment protocols are individualized.
Most of us have co-infections to deal with as well, and have taken IV & oral antibiotics for many months to years. if you let us know where you are located, we can try to help get you to a doctor. It helps if you are willing to travel to get the best care. We do not post doctors names on this forum, so you can do that via private message system or email.
I hope this helps, email me anytime, for doctors etc. [email protected] Stay Strong!
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