posted
Well it's official... I was Dx'd today with Lyme Disease. The LLMD I saw was very confident in the dx. It was so weird cause this morning before I left to the appt my regular GP nurse called me (totally out of the blue) and said that my dr wanted me to come in for a follow up.
I was a bit confused as the last time I spoke to my dr by phone she said she didn't my IgeneX tests revealed much but that she was going to look into it some more.
Well that was several weeks ago. I figured she just blew it off.
Well I guess she really was investigating it and researching it.
The nurse said she wants me to come in to discuss treatment options for lyme!
Anyways, my LLMD was going to give me abx there, but it would be free to get them from my GP at the base clinic.
So he sent a note with his recommendations for treatment. He recommended starting on 3 months of Cefuruxime.
I have a follow up with him in a month. After the three months of that we will re evalutate and change or modify abx and go from there...
He says from my WB it looks like I've had it a long time and recommends long term abx and possibly IV if the oral don't do well.
He also prescribed pro biotics and a high dose B12 even though I'm not deficient.
I have to go back next week for more labs: CD57, babesia, and ELISPOT from Germany. VERY EXPENSIVE, hopefully worth it...
I'm a bit overwhelmed and still in a bit of denial. I'm still having that "what if?" feeling.
I guess I'll just go ahead with treatment and see where that takes me. Take one day at a time.
Thank you all for your support and encouragment.
I really wouldn't be here today with a DX if it weren't for all your help. I'd still be wandering..
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Hi,
I am glad you are getting answers and starting treatment.
It is a long road so don't expect too much too soon.
Just keep reading, learning and posting!
All the best to you!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
I know it's bizarre to say it and read it, but Congratulations on your diagnosis!
That is also great news that you will have a working partnership between your LLMD and your GP. That will help so much, as long as your GP will defer to the LLMD's larger knowledge base and wisdom when it comes to TBDs.
Were you evaluated for co-infections? It is the norm to have a co-infection or 3 when you have Lyme, so that's definitely something to be evaluated for, and to put into your long-term plans for treatment.
I understand the denial, we all do. I still have moments of it, 2 years after diagnosis, and even after seeing marked improvement after a year of antibiotics. The best remedy for that is reading scientific and medical literature on the disease and the microorganism itself. It really helps to read concrete science to soothe your doubts.
There are some great resources in easy-to-comprehend form in the 3rd link in my signature line.
Good luck kareamber! You are well on your way to getting better now!
ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Welcome to our world. Wish I were welcoming you to a million dollar jackpot instead, but no such luck. You do have plenty of company here though.
Sounds like you got a good doctor. About all the tests... Quite frankly, I told my doc that I couldn't afford many of them and he understood and we ran them later down the line, as finances permitted. Up to you, but if you can't afford it, talk to him.
Glad to know you're getting some real help, kareamber. TTYL
ping "We are more than containers for Lyme"
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
k
welcome. sorry you have lyme, but at least you had a positive test result!!
many folks have to treat without it. keep in mind that IND is considered a weak positive.
here is a sample photo of the bands. the dark ones have are represented by the most +'s :
18 highly specific to Lyme (Many LLMD's say if this band alone is positive, you have lyme - see link above)
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain - Has cross-reactivity with several different types of viruses
31 outer surface protein A (OspA), specific for Bb - Has cross-reactivity with several different types of viruses
34 outer surface protein B (Osp; specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a spirochete infection but is NOT specific to Lyme (i.e, other spirochete diseases have flagellas - see link above "Western Blot Made Easy" for more info)
45 cross-reactive for all Borellia
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients[/b]
good luck and keep us posted Posts: 1127 | From atlantic city, nj | Registered: May 2008
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
k,
you might want to check with your doctor on the supplements just in case he has his own recommendations.
however, taking a high quality/high culture refrigerated probiotic is essential while you are on antibiotics. this will help the body replace natural gut flora that is being destroyed by the antibiotics.
your doc may have a professional strength he recommends, or you can go to your local health food store and get one. it should be refrigerated.
im not sure what brands you have in OK, but something similar to Renew Life Ultimate Flora CRITICAL CARE is pretty good to start with.
someone else mentioned Dr. Hoffman's MD SELECT Advanced Probiotic.
just look for the refrigerated high quality/high strain.
Most lymies take multivitamins, extra b's, magnesium, immune support, and herbal antifungals to avoid getting yeast while on abx.
Here is copy of Dr. B's guidelines. May I suggest you read thru it to get a better understanding of diagnosis and treatment. You can print for future reference. http://www.lymediseaseresource.com/BurrGuide2008.pdf
Lyme is complicated and there is alot to learn. Keep educated.
Good luck in your treatment and hope you feel better soon.
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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posted
Highly positive test.. plus you have 83-93 .. the DNA of the Bb bacteria!
WELCOME to our world!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I take alot of supplements, but my LLMD says the 2 most important ones are:
1. high quality refrigerated probiotics with at least 50 billion cultures of strains beginning with "lacto" and "bifido".
2. Fish oil. I take 6 grams a day.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
I've found the probiotic that works best for me is Ultimate Flora Critical Care 50 Billion. Vitamine Shoppe and Vitacost usually have it on sale.
-------------------- Jennifer Posts: 266 | From Ocean County, NJ | Registered: Aug 2007
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posted
Thank you so much for the help. My dr already prescribed a probiotic... it is called Ther-Biotic COMPLETE from Klaire LABS. Anyone heard of this? It says 25+ Billion CFU's Multi-species. I have to keep in refrigerated.
The only other thing he prescribed was Pure encapsulations Methylcobalamin 1000 mcg. I guess its a high dose vit b12?
I'm gonna post this as a seperate question as well to get more feedback.
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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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Good Job kareamber. Now to get well. These guys are right it is a long road, but very rewarding. Did he prescribe anything for yeast?
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
Welcome! How come your doctor ordered expensive tests from Germany? Curious.
Posts: 3528 | From US | Registered: Apr 2007
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posted
The tests from Germany are for the CD57, coinfections, and then the ELISPOT. I believe it is a specialty lab.
I have never heard of the ELISPOT until just recently. I guess it's another test, but is FAR MORE accurate than ELISA and WB.
It is only done in Germany. I don't have the website on me at the moment, but you can google ELISPOT lyme test.
I think it gives him a good idea of how bad the infection is and how long to treat. I think... i have a print off that explains it so I'll post later on it.
I'm still reluctant to BELIEVE or give in to this diagnosis. I don't know why either.
My symptoms, history, and WB all point to lyme. Do you all think my test results is a strong indicator of lyme???
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