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» LymeNet Flash » Questions and Discussion » Medical Questions » Chronic Lyme - what to expect?

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Author Topic: Chronic Lyme - what to expect?
justwondering
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Hi - I am in the process of being diagnosed with Lyme after 12 years. I was originally diagnosed with fibromyalgia. My symptoms began after a mysterious ringed sore on my ankle and a severe flu like illness followed, which the hospital ER told me was a virus. Since then I have not been the same and only new symptoms appear and worsen.

My doctor told me chronic lyme is often difficult to diagnose, so I suppose a Western Blot from Labcorp showing 4 total positive bands is good. (IGG bands 18, 23, 66 and IGM band 39)

Tomorrow I send my blood off to Igenex so I can soon begin treatment.

In spite of how crappy I've felt over the years, I've been pursuing an education in Nursing, hoping one day I'd just feel better. Do you think I can look forward to that now knowing what is wrong with me and getting treatment for it? Or will I likely always feel unwell? Am I being unrealistic pursuing such a career when I have a disease like Lyme? What can I expect for my future after extensive treatment?

Thank you so much for taking the time to help me!

Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Geneal
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Just curious as to why you are testing through Igenex following a positive WB from LabCorp.

Are you seeing a LLMD?

You have Lyme specific bands on the Western Blot. (23 and 39)

As to what to expect, there are those here who have successfully treated Lyme, even after 20+ years

Who now are 99% symptom free.

I am not sure what to expect for myself.

My LLMD seems confident that I can get into remission. I am going to trust him on that.

I am not sure how long I have been infected, but it is likely 5 years plus.

As Lymetoo says the only way out of Lyme is through it.

Hang in there and know that we are here for you.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
Curley911
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You can expect to get better if you get a great LLMD with a history of sucessful treatment protocol and IF you follow the protocal religously.

In my opinion, this should include abx, supplements and a meal plan for LD.

You will also need to be checked for co-infections. Things that can slow you down are babesia and ehrlichia if they remain undetected or untreated.

I know for sure that babs can easily be overlooked because the testing available only tests for 3 out of 9 (or 12?) strains and frequently gives false negatives even for the strains it is testing for.

Babs, Ehrlichia & mycoplasma should all be treated by symptom and clinical diagnoses.

I am doing very, very well after being particularly ill. I still have my limitations and a wonderful husband who understands.

I was dx'd w/lupus originally so you can get better!

Curley

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sixgoofykids
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You NEED to be a nurse!! We need more in the medical field who understand Lyme!!!!

You will feel better with treatment. My LLMD fought Lyme 15 years ago and works tirelessly sacrificing his own time/life so that people like us can have one. The other night he returned my call from earlier that day at ten till 8! I don't think many physicians work that kind of hours.

I know he still takes lots of herbs and supplements, but when I asked him if he had Lyme, he said he used to.

I wish I were younger so I could pursue a medical career. The nurse at my LLMD's office said that 95% of them (at the office) have/had Lyme. It can be done. It just might take you longer to finish school while battling the disease.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
justwondering
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Thank you all for your inspiration! I really appreciate it.

I am not sure why I am sending my blood to Igenex? My primary care doc recommended it before I see a LLMD. Do you think it is a waste of time and money?

Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
dmbfan
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Live as if....

Live as if you will not be sick forever.

I started treatment in June. I took part time medical leave over the summer and had a very rought three months.

Despite this, I registered for a post graduate course at night and planned to return to work full time (and have two small kids, and find time to do all of my detox regimin).

Well, had to drop the class. But you know what, I am so proud of myself that

1) I signed up in the first place-means I was living as if..

2) I had the common sense to know when to stop and not push myself.

If you want to be a nurse, you CAN be a nurse.

I may just not be in the time frame you originally planned.

Posts: 368 | From freehold, nj | Registered: May 2007  |  IP: Logged | Report this post to a Moderator
Geneal
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I guess in my very humble opinion,

Based on the bands you showed positive, along with symptoms, that in itself should be enough.

I had a Quest WB done. Only one band showed up positive (IgM 23).

That was enough to get a duck to diagnose me.

However, upon seeing a LLMD about one month later, he felt it would be a waste of

My money to test via Igenex as I had so many clinical signs and that Lyme specific band.

I am glad he did although I think I will always be curious to see what an

Igenex test on me would have read.

The money I saved helped me buy supplements/probiotics and pay for my LLMD visit.

My insurance doesn't.

Others may have different opinions, but Lyme still is a clinical diagnosis.

Serology helps to support that diagnosis (which you have), but is not how Lyme is supposed to be diagnosed.

Hugs,

Geneal

Posts: 6250 | From Louisiana | Registered: Oct 2006  |  IP: Logged | Report this post to a Moderator
TerryK
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If the test results were CDC positive it might come in useful if you have to battle your insurance company for payments.

You will need co-infection testing which will be another expense. My insurance covers IgeneX testing but unless you are medicare, you must bill it yourself. You might want to check with your insurance to see if it is covered.

Terry

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Aniek
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Everybody responds differently to treatment. Some people find they need to cut back on things in their life and take it easy.

I, on the other hand, started law school right after starting treatment. I've been working full time and going to law school at night all through treatment. I had also been diagnosed with fibromyalgia.

Honestly, if you've been sick for so long, then you probably are used to fighting through your illness and getting things done. But make sure you know when you need to step back and rest. And don't blame yourself if you need to cut back.

If you are in school, I would get tuition insurance just in case. I did my first year, because I wasn't sure what treatment would bring.

--------------------
"When there is pain, there are no words." - Toni Morrison

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justwondering
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It is nice to do that so many others have gone through it. You are proof anything's possible. I guess you are right, I have pushed myself through the last several years. I am exhausted a lot, but I manage to get things done. I am going to just take things a little slower now. Thank you all so much:)
Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Welcome!! We're glad to have you!!!

I'm sorry you are dealing with this like the rest of us!! You CAN get well though! Read my FM story in my signature line below!

Here is an excellent explanation of the Western Blot:

Western Blot explanation:
http://tinyurl.com/ffn3x

Read especially what it says about Band 39!

Wild Condor's Links and information:
http://www.wildcondor.com/lymelinks.html

 -

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

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justwondering
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THANK YOU! Very helpful info for such a complicated topic! It is difficult explaining the whole "Lyme thing" to people, but having info like that helps to simplify it.
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gambler
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After starting treatment I felt so much worse, I did not see how I was going to make it. So, I gave some of my stuff away thinking I wouldn't be around to use it.

The good news is after 2 years of treatment I wish I hadn't.

Be your own advocate, and good luck,

gambler

Posts: 243 | From chicago | Registered: Dec 2005  |  IP: Logged | Report this post to a Moderator
justwondering
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Oh wow.... I had no idea I could get that bad... So glad you were able to pull through and are doing well now...
Posts: 209 | From maryland | Registered: Aug 2007  |  IP: Logged | Report this post to a Moderator
   

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