posted
My original symptoms started two years ago, about a week or so after a tick bite. It started with what looked like a bulls eye rash, and has continued to spread from there with little or no success with standard Eczema treatments (UVB, oral chemo, steroid pills/creams, immunosuppressants etc.).
I started having more joint problems, and was diagnosed with Osteoarthritis throughout my neck and spine. Now, in the last 8 months I have started having more cognitive problems as well as twitching muscles as and uncontrollable jerking in my legs that comes and goes.
After TONS of research, it was thought that it might be Lyme or Chronic Lyme so I signed up here and got referred to a LLND.
I have since had a negative Elise and Western Blot (not igenix), but my CD57+NK is currently at a 6.
Ever since the original bite I have had recurring major depression, increased floaters/blurred vision, and a laundry list of other random symptoms, with the rash and depression being the primary.
Now that I have been seen by an LLND I am undergoing treatment for clinically diagnosed Lyme Disease, and am 2 1/2 months into treatment with little or no change.
All of the MD's, Derm's, and ID Specialist etc. say that they have no idea, or that there is no medicine for someone with my problems. I have even heard that I might be a candidate for Post-Lyme disorder, but that it goes away with time.
Is there anyone in a similar situation? Should I be looking deeper into other causes?? HELP!!! I am getting desperate now.......
Posts: 4 | From Oregon | Registered: Mar 2010
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posted
You need an LLMD!... get treatment with antibiotics.
Do NOT buy into the PLS .. that is a bunch of bunk sold by Infectious Disease "ducks."... as in quack, quack.
Sounds like you were given steroid pills.... that makes it even harder to get over this insidious disease.
Find a dr who has "cured" many.... they are out there... Maybe not in Oregon.. but they are out there.
The ELISA test is known for its false NEGATIVES...so it is no wonder it came back NEG.
If you are skeptical you have Lyme, then get a test thru Igenex... www.igenex.com Test #188 and 189.
PS... I LOVE Mt Rainier!!! It's so gorgeous!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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joalo
Frequent Contributor (1K+ posts)
Member # 12752
posted
You need to see a LLMD!! I agree with everything Lymetoo told you. There are some awesome lyme literate docs in California if you don't find any in Oregon.
-------------------- Sick since January 1985. Misdiagnosed for 20 years. Tested CDC positive October 2005. Treating since April 2006. Posts: 3228 | From Somewhere west of the Mississippi | Registered: Aug 2007
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posted
2 and a half months of treatment is nothing--not enough time to see a change. What was the treatment any how? Probably not enough.
Have you seen the film Under Our Skin? You need to do A LOT of research from the sound of your post. There is no such thing as post lyme disorder and it's not in your head! From what I've hear, Oregon is big into denying that late stage lyme exists so.....
You have late stage lyme disease and you need an llmd and a test at Igenex. Having had steroids only makes your situation worse.
Please read up more on this disease so you can get appropriate treatment asap. ILADS is a good place to start.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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I didnt notice any significant changes until Month SIX of my picc line... after God knows how many stong IV abx and orals.
If you've had it for two years, it could very well take some good time before you notice a difference.....
I had a good month and a half of feeling normal just recently. I dont remember the last time I had one full day of such clarity, let alone a month and a half. That was after 7 months of intense PICC treatment and have been continuing the orals since getting my picc removed.
You have to fight for your health; which sometimes seems impossible as I know I couldnt ever even think of a come-back to people's obnoxious and ignorant comments.
and yea.... having "post lyme sydrome" is like someone telling me I'm bigfoot.
what i find even more hillarious is that they told you it would go away.
....the doc needs some good, updated and CORRECT info.
Please! Don't settle for the hopeless doctors, because there ARE physicians that will help you get better! (note my use of the words 'doctor' vs 'physician')
I was very skeptical about my diagnosis. Even after the fantastically wonderful Dr. J gave me the second opinion.
At that point, however, I could feel myself slowly dying, so I figured there wasnt really too much to lose by trying the picc line.
It took until month 6 into the craziness, but i started to really FEEL my body starting to fight back.
I'm still on the road to recovery, but I did not stop searching until I found the right physician.
Okay. that's enough of my mumbojumbo.
Good Luck (hug) ~Green
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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posted
Thanks to everyone for the support and advise. I apologize for not being as active here as I should be, but things get rather overwhelming for me.
I have been seeing an LLND since late March 2010, whom I was referred to by others in the forum. I was diagnosed with Late Stage/Chronic Lyme and Babesia, possibly Bartonella co-infections.
My treatment when originally posting this consisted of high dose oral Cefuroxime and Zith, along with a homeopathic detox regimen and Amytriptiline for my insomnia/depression.
In early July, CNS symptoms were lessening, but my allergies became so bad, that my skin flared horribly and began to weep all over, uncontrollably, for days.
I was almost literally at the end of my rope when I ended up in the ER at Oregon Health Sciences University.
I am now starting back on my ABX regime after a short vacation and increase in CNS symptoms.(LLND figured the major skin/rash flare was a toxic overload, and possible herx???)
The doc I saw at OHSU asked that I attend their Morphology Clinic due to the history etc. I did, and am now going through the whole workup again with OHSU folks as well as continuing treatment with my LLND.
OHSU immediately noted the atypical presentation of my rash, in conjunction with other symptoms, so my hope is that their being a Research Hospital will be that much more helpful.
I now know why there are so many postings online regarding Kaiser and their approach, as I too spent much of the last 2 1/2 years dealing with them until finding my LLND and regaining some hope for relief.
Posts: 4 | From Oregon | Registered: Mar 2010
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