posted
I had a repeat ELISA a week ago and it came back negative. The lab is in Salt Lake. My previous labs ELISA and Western blot were done by Stony Brook and were positive for IgM Lyme with ELISA at boderline. They were done in 2010 with my tick bite in 2006. An infectious disease doctor repeated the test b.c. in his notes he had it as a lumbar puncture-- it wasn't it was a blood test. The new lab is now refusing to run an IgG Western Blot b.c. the new Elisa was negative. Should I be amused? In 2010, I had only 2 IgG bands. Anyone?
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
Seems to be like you have lyme, since you have tested positive for bands before. I don't know your story...have you done treatment? or are you just trying to begin? You need to find an LLMD asap and I would think you'd want to use Igenex labs.
-------------------- Treating lyme, bart and babs Posts: 506 | From NE | Registered: Dec 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- OtterJ,
I am also in Oregon and may be able to help you understand the politics of the "No Lyme in Oregon" rule among most MDs here. The few who might be open to helping just don't know enough.
There are, however, some ILADS-educated LL ND (naturopathic doctors) here. Most with lyme go to either California or Washington state.
however, so that I can read your post, I have to break it up with some breathing space for my eyes.
For future posts, you will get more replies if you can add some white space with short paragraphs.
--------------------------
OtterJ posts:
had a repeat ELISA a week ago and it came back negative. The lab is in Salt Lake.
My previous labs ELISA and Western blot were done by Stony Brook and were positive for IgM Lyme with ELISA at boderline. They were done in 2010 with my tick bite in 2006.
An infectious disease doctor repeated the test b.c. in his notes he had it as a lumbar puncture-- it wasn't it was a blood test.
The new lab is now refusing to run an IgG Western Blot b.c. the new Elisa was negative.
Should I be amused?
In 2010, I had only 2 IgG bands. Anyone?
(OtterJ in Oregon) -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The Oregon Lyme Disease Network, just closed last week (due to lack of funding). However, various support groups around the state are still working hard.
You can find the closest support group to you through On-line support through Lyme Disease.org -
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- So,
2006: tick bite [with EM rash - editing to add that from a post below where you said you had also a 7-inch bulls eye rash]
2010: from Stony Brook (in NY), Western Blots:
positive for IgM &
two positive bands IgG
---------------
You do not need a repeat lyme test if your symptoms never really resolved completely for a substantial amount of time.
You should be assessed for other tick-borne infections, though.
You need an ILADS-educated LLMD or LL ND. Your only choice in Oregon is a LL ND - there are no LLMDs.
I hope you can connect through the support line above. Links above explain much more.
I normally don't "do" PMs (private messaging) as I'm just way too tired for extended communications. However, I do have the phone numbers for support groups below.
If you are near any one of these, you don't have to say where if you want to maintain that privacy, just post that you would like the phone numbers and I will PM those to you.
Wish I could help you more but I do hope you find your way from here. Take care.
------- Oregon Support Groups in:
Southern Oregon; Benton County;
Portland ; Hood River; & Eugene. -
[ 01-25-2012, 06:38 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- THE KAISER PAPERS -- regarding the "Stigma" of Lyme.
The author of this site below lives in Vancouver, WA. This profiles his experience and that of other both in Oregon and Washington state. Although there are some LLMDs and LL NDs in Washington state; No LLMDs, only LL NDs in Oregon.
Most are not able to be covered by any insurance but that is generally the case in any state. ------------
Links here will also explain the general thought process and patient experiences of just about everyone in Oregon, regardless of their insurance plan.
It�s a very tough road for lyme patients. Once �lyme� is even whispered, the patient is branded as lazy or crazy - and bad treatment most often just follows even if they switch doctors.
==========================================
Now, I just can't end it there. There are many things you can do to help yourself both in terms of self-care along the way - and in finding a LL doctor (or at least reading all you can if you have no way at all for a doctor).
Having lyme (&/or other tick-borne or stealth infection) is like being tossed into an advanced graduate level course, mid semester, without ever even having an undergraduate course in the subject.
It can be overwhelming, so that is why, if at all possible, it's so very important to connect as soon as possible with an ILADS-educated LL doctor.
Again, the links above are a good start.
Do take excellent care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes, there is more to this story. Have LLND but have been off a years worth of Minocyline since August 2011.
Started to have more symptoms in August, developed Bell's Palsy in October and had facial swelling and horrible pain throught head from December until current.
ER visit beginning of Dec. for nausea and headache.
Put bad self back on Mino on December 24th due to extreme pain. LLND kept saying take herbal drops-- which didn't do anything.
Went to infectious disease doc thinking that I could get all specialist at teaching hospital on same page so that when in ER, stoopid docs didn't try to tell me that I just had a migraine.
I've felt like there was an alien lifeform growing in brain since about October. CT scan clear for head and MRI. Connected to support group in Portland. Haven't been due to illness in 3 months so haunting boards here.
Posts: 482 | From Oregon | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I'm sorry to hear you fought the fight at OHSU. They are very much against the idea of lyme disease. VERY much. But so are all the other hospitals and doctors here.
I'm surprised it's not engraved over all their entry doors. "Lyme: Don't even think about it." as that is basically the official state medical model.
I'm really sorry you had to find out the hard way.
There are two LL NDs in Portland, maybe more. You might call the guy with the Portland support group to get a sense of the differences in how they treat - and to find a "lyme friendly" PCP if possible.
There is also an option in Vancouver, WA that the Portland support leader will know more about.
I will also post a thread that has lots of alternative approaches that you can compare and contrast. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
Understanding of the importance of addressing the infection(s) fully head-on with specific measures;
Knowing that support supplements are important, but NEVER enough alone. And knowing which supplements have direct impact, which are only support and which are both.
You can compare and contrast many approaches.
BASIC HERBAL EDUCATIONAL links, and
BODY WORK links with safety tailored to lyme patients,
RIFE links,
BIONIC 880 (& PE-1) links, and
LOW HEAT INFRARED SAUNA detail. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Check your PM file. Just sent:
PDX support phone number;
Two LL NDs in Portland; one LLMD who is also LLND in Vancouver, WA.
-----------------------
As you come up for air, here are my best suggestions until you find a LL doctor who fits your needs:
Allicin capsules &/or Olive Leaf Extract.
Magnesium
Fish Oil
B-Vitamins, D3 (and other vitamins, too)
Probiotics
I assume that you probably are familiar with all those as you were seeing a LLND. However, say so if want links to the best sources for those while you sort through all this.
I also assume you are totally off all processed foods and diet sodas or any artificial sweeteners, MSG, and even "natural flavors" as these can all make this much worse.
This can get better. Really. You may not see it right now but it can. ----------
Note: I am not any kind of health professional. I simply share what I've found helpful. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Keebler, When I was in this docs office last (infectious disease) he had to call Stony Brook and complain about the test being labeled as CSF test. Stony Brook asked the doc if I had a bulls eye (yes, it was quite large at least 7") and Stony Brook told the doc that the bullseye was better than any serology in confirming Lyme. I thought I had him then, but in a heartbeat the doc said, "well, it was probably just a spider bite." The new joke is, where are all these giant spiders?
Posts: 482 | From Oregon | Registered: Feb 2011
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posted
I hate spiders, too, GlitchyMomma, and have no pituitary function so no thyroid, cotisol, or estrogen/progesterone. This happened about 18-months to 2- years after my tick bite. I wonder how many others have specificlly pituitary disease here on the boards due to possible lyme infections?
Posts: 482 | From Oregon | Registered: Feb 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Lyme is well known to attack/affect the HPA axis ( Hypothalamus-Pituitary-Adrenal axis).
So, yes, pituitary conditions in those with lyme are highly likely to be because of lyme. Same with various endocrine issues. And that's why it's best to be treated ONLY by ILADS-educated LL doctors, when at all possible.
Although not everything is lyme, unless they know what CAN be lyme, they just can't do their job. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Bottom line with anything that can go wrong in the body: Yes, lyme can cause it. Or not. Or mask it. Or it can mask lyme.
It can take a lot of time and energy trying to figure out which came first.
This is why for those who can, ALL matters should be discussed with LLMD first.
As for prevention, we just do the best we can. Because lyme can cause do much damage and havoc, we have to absolutely exemplary with our nutrition and self-care. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To support HPA axis (Hypothalamus-Pituitary-Adrenal "triangle system" of these integrated organs):
. . . TREAT infection; SUPPORT heart, liver, nerve cells and adrenal systems.
One's LLMD is the best source for individual advice but there is also a wealth of detail about the HPA axis and lyme, and also about adrenal support.
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/
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