posted
Test after test have come back negative for everything under the sun. I had one tier positive on a lyme test back in February of this year but subsequent tests came back neg. My symptoms match chronic lyme but the docs say there is no evidence to show that. My wife is moving on and finding a new boyfriend, our divorce is only a matter of time so the emotional pain is adding to the physical pain making this unbearable. I am getting close to the edge and if I cannot find an answer I fear going over. I am supposed to see a infectious disease specialist soon but no idea if that is going to help. My neurologist thinks it might be linked to bart but not sure...help..
Posts: 98 | From Maytown PA | Registered: Apr 2011
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Have you tested for mold? Many of the symptoms are the same as mold.
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
What docs? Are you seeing someone who specializes in tickborne diseases? I don't mean infectious diseases docs.
Testing, as gets said on this site frequently, is just part of the picture and is not perfect. Chronic cases sometimes produce no antibodies, which I presume is the kind of testing you are getting.....antibody detection testing like the ELISA or Western Blot.
Have you done any coinfection testing?
Please get copies of all test results and post them here.
There is a new culture test available now. It has a 20% false negative result but no false positives. So, although it is not perfect either, it is much better for chronic cases. This test has been described in previous posts on lymenet. Why don't you see if your current doc will order it? Then if it is positive, move on to a LLMD for treatment.
You are just spinning your wheels going to uninformed docs.
Posts: 8430 | From Not available | Registered: Oct 2000
| IP: Logged |
posted
Do you have a llmd? What labs did you test through? Have you tried Ignex labs to test for lyme? So sorry you are having a hard time. Hope you can find your answers soon.
Posts: 323 | From Michigan | Registered: Sep 2006
| IP: Logged |
posted
You need to see a llmd and get tested by Igenex! I have always been neg. by other labs., yet clearly positive by Igenex. Also, tested positive by an atigen test, which means the actual bacteria was detected. Even after that, still testing negative by MDL, Quest, Labcorp. Get properly tested to find out for sure.
Posts: 418 | From NJ | Registered: Sep 2007
| IP: Logged |
Tammy N.
Frequent Contributor (1K+ posts)
Member # 26835
posted
Hang in there. You are in a tough spot.
Regarding Lyme (and the whole picture that goes with it), you need to find a GOOD Lyme Literate doctor. That is step one. Most tests come out negative, but a LLMD will pay attention to more than just lab results. In addition to Lyme and other tick-borne infections, you must also look into Mold (as momlyme said above, so true), plus also heavy metal toxicity, dental issues, deficiencies, parasites and detoxing abilities. I know it's a long list. But I wish I knew all of this 16 years ago, I would be much further along. You will get there. Hang tough.
Best to you, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
| IP: Logged |
posted
Hope you are able to get help very soon!!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
momlyme
Frequent Contributor (1K+ posts)
Member # 27775
posted
Jon, could you post to let us know you are alright?
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
| IP: Logged |
posted
I cannot afford a LLMD, am waiting to see if I can get disability and going through a divorce at the same time. New symptoms are just about killing me.
Posts: 98 | From Maytown PA | Registered: Apr 2011
| IP: Logged |
posted
jon, my heart absolutely aches for you. i will be thinking of and praying for you to find peace as soon as possible. please keep us updated on how you are. love, jess
Posts: 651 | From ct | Registered: Sep 2011
| IP: Logged |
Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Twisted Jon, I saw one of the top infectious disease drs in my state (one that docs go to), and this doc was absolutely clueless about lyme (don't waste your time with them--they are trained to only adhere to conventional medicine--can't think outside the box).
If you can't afford an LLMD, what about a naturopath or a NP with ILADS training? I got by with an acupuncturist (helped!) when I went undiagnosed for years!
You can also research herbs, book: Healing Lyme, by Steven Buhner.
Also, google Dr. Eva Sapi (she had lyme and I think she cured herself with samento banderol, burbur and pinella (no abx).
Don't give up. Study, research like the rest of us, and hang in there! You can do it!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
| IP: Logged |
posted
I am looking into what I can. Right now I cannot afford to pay attention lol much less anything else. I very much appreciate all the prayers and I am trying very hard to stay positive but it is beyond my abilities some days. I am in such pain most days it is hard to function but I do my best.
Posts: 98 | From Maytown PA | Registered: Apr 2011
| IP: Logged |
tick battler
Frequent Contributor (1K+ posts)
Member # 21113
posted
If you read more on this site, you will see that test results are pretty worthless. I think it's safe to assume you have lyme if you live in PA and have lyme-like symptoms. Most living in PA have lyme, whether they know it or not!!!
If you can't afford an LLMD, you can treat yourself, either with herbs or rife. There is a man in Wayne PA who lets people use his rife machine for free. How far are you from the mainline?
Send me a pm if you want more. I can also provide you with the herbal protocol that has worked for my family. We had bart, babesia, ehrlichia and lyme.
tickbattler
Posts: 1763 | From Malvern, PA | Registered: Jul 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic