New...CA LLMD but ready and willing to travel....

HI Chickymonkey!
Welcome to our little community!!

Well, let's start with those test results! Have you done any research on your own to know what they mean? In case you haven't yet, here's the breakdown for you:
Band 31 indicated OspA (Outer Surface Protein A) of the Lyme disease bacteria, although it isn't thought to be specific to Lyme - other bacteria could trigger this.

Band 34 however, indicates OspB - which is specific to Lyme.

Band 39 indicates BmpA (Bacterial Membrane Protein B) which is also specific to Lyme.

Band 41 indicates the tale of the spirochete, but is not specific to Lyme. Other spirochetal infections will 'light up' this band as well.

IgM antibodies are made pretty much right away, the IgG antibodies indicate a chronic infection.

Now, if you already knew this, forgive me!!!

If you haven't already, it would be best if you would take the time to read through our "New to Lyme? Start here!" thread that sits at the top of the forum, as it's packed full of important information, symptom lists - as Lyme rarely travels alone - important information on detoxing and more.

There are several avenues for you to get the name of a LLMD. Here are the usual routes for those here:
you can start a new thread titled something like:"Looking for LLMD in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can also email our long time member, Dan's Mother at:phassan@optonline.net

You can also email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Although I'm not a doctor, I would say with two positives on Lyme specific bands you definitely have Lyme disease. Depending on your symptoms, you could have other tick-borne infections as well.

You won't have to travel outside of Ca necessarily, but it would help a lot if you would let us know the nearest big city to you so that we can understand what part of Ca you are in - it's a pretty big state you know!! LOL!

I have to go out and milk my goats now - literally!! - so I need to sign off. I'm sure someone else will be along to help you soon. If not, I'll be back!! Giggle!

There's someone in San Diego. She's a naturopath, but she can write prescriptions and she uses abx. I'm going to fly out to see her. If you want to know how it went, email me.

She has a good reputation.

Margaret

Dr P in sac.. Search fibromyalgia, Sacramento and you'll find him.

There are several NDs and MDs in socal if you want to travel down I'll send you a list.

Hi Chickymonkey, I am from California but have lived in Oregon for the past 23 years. My parents actually lived in Sacramento for about 10 years or so. From what I have read, California seems to have quite a few doctors who treat Chronic Lyme. My husband sees a chiropractor who treats Lyme up here and he has been getting better. Good luck in your search.

cat53: if that is the case, I haven't found these LLMDs yet! I found a few in the bay area...the one my neighbor sees (who she isn't happy with) booked by appt for Oct. Yipes.

Hey Pathogenkiller....quick question about docs like Dr. P...do I call and just make appt without asking about lyme? I don't know the proper protocol. His website doesn't mention much about him treating lyme so I don't want to NOT say anything, walk in and he's like....uh, no I don't treat that anymore or whatever.

Thanks for everyone's help and guidance!

I'd say something.. But to be honest, I wouldn't take your test results above as positive. I'd tell them you had an Igenex test that was ambiguous. Those in determinant bands aren't a positive and your positives are not Lyme specific.(not that I'd share that level of detail).

Band 31 IS specific to Lyme - please see: www.reocities.com/HotSprings/Oasis/6455/western-blot.txt

The bands that have the IND next to them, they triggered a response, and since many of those were Lyme specific bands (31, 34, 39, 83 & 93 on your test) nothing else can make them respond - soooooo they need to be interpreted as positives, since something made them 'light up'.

Path, no problem. As you probably well know, I'm just trying to sift through all this info...

Yes, I saw that on the IgeneX site, and asked my doc to request test 488 and the coinfection panel. I don't really know what test 488 does exactly...does it confirm or deny lyme? Does it say what other virus is activating band 31? (edited: these ques were rhetorical...I don't expect you to know the answer)

My primary who is ordering these tests at my request has no idea how to read them.

Thanks for everyone's help.

Post Edited (chickymonkey) : 6/27/2013 7:53:36 PM (GMT-6)

Eh, I'm sure I have it. (I think most people test + for EBV anyway and I've been diag with mono 2x in my life.) I don't find much regarding these neuropathic shooting pains, brain fog being EBV.

I talked to the woman from the Auburn support group and between my IgeneX test and the progression of symptoms she's certain I have lyme. She's given me somewhere to start and someone to call.

On 4/20 of this year we were in our RV by a river in northern CA. We walked through grass down by the river on a "ladybug hunt" with our daughter.

The following week I had a terrible headache that would not go away.

1 wk after poss exposure my feet started to burn

2 wk my hands and feet were swollen and burning. The soles of my feet hurt and I started feeling "crisp". I can barely step out of bed.

3 wk ripping tendonitis-like pain in all my joints, aching, stabbing, burning pain. I can't drive or walk.

4 wk serious brain fog. 3 times I wake up in the morning and I don't know who I am or recognize my bedroom. I continue to feel "drugged" to this day after 4 weeks of the fog.

There's more detail to my symptoms but what I see now is a picture of feeling fine on that trip in the RV, a potential exposure walking through the dry grass and then a progression of illness.

Blood drawn on 6/3 (6 wks after exp) a POS on 2 bands and IND on 3.

Yep. I have lyme.

Bummer.

Well, I will certainly ask the doctor about EBV...when I finally get to see one! My primary is completely naive to any of this and the rheum I saw was a bozo.

Until I do get to see someone, I'm taking the doxy I was given and I'll keep taking it. Wait for the IgeneX additional tests to come back.

Here's my symptom log/progression. Probably more than you ever wanted to know about me (ha!)


4/20/13
spend the weekend in the RV by the Sac river in Red Bluff. I had back pain, but otherwise I had been feeling really well.

We walked down a path to the river. We searched through dry grass and a field for ladybugs with our daughter.


4/21 – 4/26
headache, every day. It won’t go away with my normal saline washes or meds.


4/27
feet burning


5/2
feet & hands swollen, burning, pain


5/4
feet & hands so swollen and painful it takes 4 hrs to get out of the house


5/8
wake with ripping Achilles pain, left heel. I think I’ve ruptured the tendon


5/9
both Achilles are now involved, ripping burning pain, I can barely walk. My feet feel “crisp” like I’ll rip all my tendons/fascia


5/10
hands & arms, legs & feet: aching, burning, shooting pain. Tingling, pins and needles. Whatever body part I use hurts—my hand joints hurt when I hold the steering wheel. My elbow hurts when I put it on the console.


5/11
wake up stiff. Hands & feet swollen and hot. Knuckles hurt. Fatigue. Nausea. Pain shooting up my arms. Achilles pain. Pain that comes and goes all over my body. Left shoulder feels like it’s ripping.


5/14
chest pain, light headed, heart palpitations. Almost fainted


5/20
my calves and forearms feel like they’ve got a stocking on them


5/21
feels like someone is poking needles through my eyeballs


5/22
appt with rheum. He tells me to get more sleep and start swimming. Orders blood tests.


5/23
muscles spasms in legs


5/24
brain fog starts. Nausea. Flu symptoms. Muscle spasms. Dizzy/lightheaded.


5/27
4-5 mornings I wake and I can’t remember who I am or where I am. The moment of waking where you regain consciousness and it all comes back to you, it doesn’t come back to me and I start to panic. I think I’m losing my mind.


5/28
chest pain, short of breath. Schedule surgery in Atlanta for silicone implant removal. Blood tests back from rheum, all clear except elevated liver enzyme. No RA, no elevated ANA, no HLA B27, no hep C, no lyme.


5/29
feet burning, hands hurt and tingly, heels burning, bad brain fog with spinning feeling. Wake up at night with swollen tongue—I’m biting my tongue. Met with (primary) to review blood work. Asked for lyme test through IgeneX.


5/30
feel very “sick” today. Head is cloudy. Exhausted. Head is now “buzzing”.


5/31
buzzing in head. Head feels fuzzy. Pain in shoulders, elbows, heels. Hands feel like they’re losing sensation like I can’t properly feel the keyboard.


6/3
blood drawn for igenex


6/4
angry, anxious, rageful


6/10
fly to Atlanta for explant surgery


6/13
surgery. Iv antibiotics. Start Bactrim as well.


6/15
severe brain fog, memory loss. I am in a stupor. I think I’ve lost my mind. Myoclonic jerks start.


6/22
fly back from Atlanta


6/24
igenex lab result shows positive on IgM bands 31 & 41. Bands 34, 39 and 83-93 IND. IFA equivocal. IgG neg, PCR neg.


6/25
burning sensation in calves, flu like feeling, sensitive skin, tight neck, heels hurt, chest pain, weakness in hands, knees are making cracking noises. mid day body temp is 97.7.

Hmm..Chickey, If I hear of any any good LLMD's the bay area -where I'm from- I'll let you know.