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Posted 9/14/2016 2:49 AM (GMT 0)
Hi..new here and joined after reading for a while, so I thought I would share my story. I'm being treated for neuroborreliosis, Bartonella and Babesia. Looking back my symptoms probably started 10 years ago and my Dr. (Dr. R in Manhattan) said I've been infected for that long. Igenex results IgM +31 IND 41; IgG +28, IND 31, IND 39, ++41, ++58. IFA B. Burgdorferi GMA 40, HGA phagocytophilium IgG 40.

Galaxy results Test IFA B. Henselae 1:256 B. quintana 1:256. (I think positive is 1:32!!)

8 years ago had bilateral Uveitis. Then docs thought I had pneumonia then west nile virus. Live in South Jersey, do my own landscape been bitten by everything including ticks. Had what i thought was a bullseye mark about 10 years ago, but it went away. Massive headaches for two years.. Now back problems, neck problems, knee problem, night sweats, muscle weakness, muscle twitching, muscle spasms difficulty walking, falls. Saw a Neuro back in December who after an EMG gave me a diagnosis of motor neuron disease. A good friend told me to pursue a Lyme Doc, so I did. A couple months ago I was having sudden stabbing pains in the bottoms of my feet but only for about a minute at a time, now it has subsided. Although done my first round of IV meds (Ceftriaxone and Flagyl) I'm actually worse so Dr. R is starting me on IV Doxy and Azithro along with a detox flush.
Posted 9/14/2016 2:57 AM (GMT 0)
Hi Chins Up! Welcome to our community!


I'm glad you pursued a Lyme Dr. (you have a wise friend) and have started treatment.

Since you are new here, it would be helpful for you to take a look at the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

I hope you find this to be a supportive and knowledgeable group of people here.

Please feel free to ask any questions you have...or if you feel like venting - go right ahead.
Posted 9/14/2016 3:15 AM (GMT 0)
Thanks Girlie!!
Posted 9/15/2016 12:37 AM (GMT 0)
Let us know how it goes with the IV doxy and azithro
Posted 9/15/2016 12:45 AM (GMT 0)
Welcome to the community! So sorry for you pain. The toughest part of the battle is over! You have a diagnosis and you are working with someone lyme literate. Self-education has always served me well and might I suggest checking out what others put together? https://www.healingwell.com/community/default.aspx?f=30&m=1606610
Also - I really like Stephen Buhner's books. From what I've learned and observed - each individual is different and respond different to different protocols.
Also..
DETOX DETOX DETOX
http://www.tiredoflyme.com/detox-methods.html
Posted 9/15/2016 12:52 AM (GMT 0)
Hi Chins up!

Girlie and Questing have already covered most of the information, but I did want to stop by and say hi! So, welcome to our community!! I'm so glad you found us.
Posted 11/9/2016 7:47 PM (GMT 0)
Update. about to finish my last week of IV Doxy and Azithro. Spoke with Dr. R yesterday and I've gone down hill. Hard to walk, hand muscles (and other muscles) are wasting away. Gonna take some time off the antibiotics and detox for a while. Any thoughts? Thanks
Posted 11/9/2016 8:22 PM (GMT 0)
I was just going to ask if you were detoxing and taking any supportive measures for your body?

Here is one of the better lists of detoxing suggestions: www.tiredoflyme.com/detox-methods.html and there are also some suggestions in our "New to Lyme?" thread.
Posted 11/9/2016 9:16 PM (GMT 0)
Chinsup,

Welcome. I'm sorry you are going through so much but happy for you that you have a diagnosis and made your way to this board. The moderators are lyme experts. I call them lyme-angels. They have saved my sanity. Also know that many on here have chronic lyme (being misdiagnosed and having had it for a while). Detoxing and diet are very important. I see Dr. R. too. This is a healthy place to vent and ask questions. You are not alone. Feel better!
Posted 11/9/2016 10:17 PM (GMT 0)
Thank you so much everyone. My fear is the diagnosis from the neuro that seems to be coming to fruition lately. But I need to keep focus. I have a great wife and two great teenagers. I'm taking glutathione and saline drips between the antibiotics, now Dr. R is giving me a vitamin drip. He suggested I follow up with Lyme literate neuro for IVIG.
Posted 11/9/2016 10:24 PM (GMT 0)
What did the Neuro tell you?
Posted 11/9/2016 10:26 PM (GMT 0)
ALS
Posted 11/9/2016 10:39 PM (GMT 0)
ALS is actually a fairly common misdiagnosis for late stage Neuro Lyme. The symptoms are nearly the same.

Here are only a few of the many articles that show people who were diagnosed with ALS having it go into complete remission after effective Lyme treatments:
/www.lymedisease.org/372/

I'm not sure just how accurate this article is, but it's at least eye opening:
als-cure.com/als-lyme/als-patients-infected-with-lyme-bacteria-borrelia-spirochetes/


/lymehandbook.com/index/400-misdiagnoses/450-lyme-als/

There is story after story of ALS patients that were misdiagnosed and actually had Lyme and once treated they recovered. I would encourage you to continue with effective Lyme treatments (and don't give up until you have exhausted many), as Lyme can be put into remission, while ALS can't. So don't give up!!

Not to mention that your testing shows you have Lyme - no doubt.
Posted 11/9/2016 11:19 PM (GMT 0)
Chinsup,

I'm so sorry about your diagnosis. What are you symptoms? Does Dr. R. believe it is ALS or does he believe it is Lyme. I agree 100% with Trav - many misdiagnosis of ALS. A neighbor in my building in NYC went from lyme, MS, ALS. Never made the connection that it is all the same.

I know of Dr. Y (seven letters ends with R) on East 34th - for neuro lyme. Is that who you are seeing?

Please keep us posted on how you are.

Prayers and hugs to you.
Posted 11/10/2016 1:55 AM (GMT 0)
Chins Up - have you heard about Dr. Martz? He was in the Under our Skin documentary.

He was diagnosed with ALS - tested negative for Lyme (I think 3 X) - and then got a positive from Igenex.

Treated...and is well now.

You can listen to him tell his story:

/www.youtube.com/watch?v=UY9FdULDV6M
Posted 11/10/2016 4:32 AM (GMT 0)
Traveler, thank you for the articles, I truly appreciate it. Huddie, Dr. R said he hoped I would have plateaued by now, but he said we are only half way up the ladder with abx he thinks I need to detox a while and see Dr. Frid (neuro lyme) in Manattan for possible IVIG. Dr. R thinks I have had lyme for 10 years and my body was giving up the fight. He is still hopeful though. My symptoms currently are weakness in my legs and arms, muscle wasting noticeably in my hands and arms. Stiff neck, muscle twitching arms and legs. When I walk (with a cane) my knees and ankles crack. I have Hyperreflexia (tap my knees and they really jerk), my EMG showed a pattern of ALS which is why the neuro gave me the dark diagnosis. Historically, I have lived in South Jersey my whole life, do my own landscape and have been bit by everything including ticks. I've had welts from the bites and from what I can remember a bullseye. Camp with my kids, deer in my back yard endemic area. 8-9 years ago I had bilateral uveitis, then severe flu like symptoms three or four times and the docs said possible west nile and or pneumonia Severe headaches a couple years ago but rare now. Recently I had this sharp pain shooting in my foot that would last a few seconds, but that has subsided. Night sweats but they have subsided. Couple years ago, my knee swelled up but I didn't injur the knee.

Girlie, yes I have heard of Dr. Martz. Amazing story and I bought the Under our skin documentary. Thank you all for the kind words and support.
Posted 11/10/2016 11:10 AM (GMT 0)
Be sure to let us know how we can be of help. You can ask questions about nearly anything here.
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