posted
My husband was MS dx'd for almost 8 years, treated Lyme for 6 with dr.P in Ct with just about everything....felt great on IV but dropped off a cliff after.....My husband was pretty demoralized. We were self treating and floundering in self doubt. Dabbled in rife--not enough to know if it has potential.
Finally! a confirmation. We are waiting for a call back from the lab now. Our PCP who was supportive with a go-round of IV, was doubtful that he would be positive stating, "I don't think anything is going to come of this." She signed off on the culture test to sooth us. She was a bit sheepish on the phone with the positive result, but also sober and serious when she recommened we go asap to an infectious disease doc....This really could be a game changer for us.
So I have to ask, where should we go for some fairly aggressive, IV treatment? Location isnt a bid deal.....Dr. J. in D.C. came to mind, but would like to hear suggestions.....I can post in Seeking, but I wanted to share this for those out there in similar situations, especially MSers who face doubt and accusations that they are delusional for thinking they have lyme and not MS. The psychological toll can be huge. Thanks for listening and any help even tho I haven't been around these parts in a long while.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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posted
This is amazing! Wow! you won't need to plead or beg anymore. Losing your wonderful doc in CT as I did was certainly a set back for your husband and family but now you can at least begin with your PCP and go forward.
Imagine if anyone with MS has doubt and simply wants to rule out Lyme disease/Tick Borne Diseases.
I don't have doubt, but needing a TKR and going through 3 meniscus surgeries (both knees) and HAVING to put up with getting Cortisone shots cause LYME/Tick Borne Illness isn't taken seriously is SO frustrating!
I'm getting my test done so I can be a CARD carrier with my results...and perhaps the Mainstream Drs. will finally NOT give steroids to us with Lyme. geesh!
rant is over, this really is a positive for you. Congrats and the best to you and yours. I will look forward to reading about what comes next especially the Bartonella results.
Posts: 158 | From PA | Registered: Oct 2006
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Great to hear it works...I was wanting this confirmation you gave us.
Did you get pictures too. Always be sure and get copies for your own records.
Best of luck with finding a great LLMD to help you get well. I would not trust a IDS to ever give you what all you need to beat this.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- For others who may want detail on that new Advanced Labs test, scroll to the end of this thread: ----------------
posted
Yes, they sent a picture. Two nasty little spirochetes. We are having follow up pcr doing, really interested to find out what strain if possible.
I've been sick with the flu so we haven't done our due diligence on doctors yet, but thanks to all the lymenetters who are always ready to help.
Tory, we miss Dr.P. very much too!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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quote:Originally posted by Sojourner: Yes, they sent a picture. Two nasty little spirochetes. We are having follow up pcr doing, really interested to find out what strain if possible.
I've been sick with the flu so we haven't done our due diligence on doctors yet, but thanks to all the lymenetters who are always ready to help.
Tory, we miss Dr.P. very much too!
Would you be able to post a picture? I would love to see those evil little things
Posts: 574 | From Out there somewhere | Registered: Jul 2010
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posted
Absolutely. I received a fuzzy faxed version (still can see them but not super clearly) from our PCPs officee. I'm having Advanced send me an actual hard copy in the mail since the PCP office shredded the originals......gotta love it. As soon as I get a better copy, I'll post it.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Your kidding....your doctor destroyed medical records....my Elisa that said pos. was not in mine either... cos the WB they ran only showed one band and I know they would not have ran the WB if the Elisa was not pos. in the first place. I was so ticked---
-------------------- 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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susank
Frequent Contributor (1K+ posts)
Member # 22150
posted
I am waiting for my pictures. I assume our pictures will all look much alike. They do send us photos of "our" spirochetes, right? That has been my understanding - but sometimes I wonder.....
-------------------- Pos.Bb culture 2012 Labcorp - no bands ever Igenex - Neg. 4 times With overall bands: IGM 18,28,41,66 IND: 23-25,34,39 IGG 41,58 IND: 39 Bart H IGG 40 Posts: 1613 | From Texas | Registered: Aug 2009
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posted
Susan...I'll post ours when I recieve them, if you do the same we can compare.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Destroy your medical records---and something as important and valuable as a positive Lyme test??!! That's illegal! They are legally required to keep them for 7 years and to give you a copy when requested. Unreal.
Posts: 3770 | From around | Registered: Mar 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
I think their was a misunderstanding. The medical records weren't destroyed. It was a grainy photo of the bugs.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Yup - MS diagnosis is typical with neuro Lyme. (MS or AZ!)
Congratulations! Now you can hammer it!
I expect that the Advanced Labs test set you back a few hundred - if I'm not getting too personal, did your insurance pay?
Wish your husband best luck on the road to recovery.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Hi, Yes read in many researchers labs that MS/FM/Cfids/ALS/Parkinson's/ & list goes on that these so called auto-immune diseases are Lyme related finding more infections daily some we are not familiar with. Very scary stuff when you read from some of top researchers on Lyme/ Remember Lyme is just city not disease. I do not know what to tell you have been dxed with MS myself many times symptoms same as Lyme just diff. types same as cancer 100 diff. types. Good Luck my prayers. Huggggssss,Kerry
Posts: 746 | From Clearwater/fl/Pinellas | Registered: Jun 2003
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