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Posted 3/16/2011 4:27 PM (GMT 0)
Hi,

It's a long story folks, this is a short version! A few years ago I had a tick on top of my R thigh, pulled it off and tha head came out with it. It made a sore that was red about an inch across with a much lighter spot/hole in the middle, it took much longer than usual to heal. I can't remember if my joint problems started soon before or after the bite. Anyhow I first developed wrist pain in 05 and ignored it till 08 when it started hurting enough to bother me quite a bit and made me concerned that if it kept progressing I was not going to be able to work ( did heavy mechanical). Also in 08 started having shooting pains in arms and legs like small lightening strikes. Have tried nsaids, colchicine etc. and keep getting worse. Have been checked 3 times for lyme (my suggestion to docs) and docs say negative. Been going to a rheumatologist and as I kept getting more pain weekly told her I had to have some relief, could only take so many pain pills and still work, so give me some prednisone. Starting with 10 mg two days then 7.5 for a week helped 75%, then at 5mg daily pain and inflamation started creeping higher. By the way pain and inflamation (p&i) is in mant joints. She's been saying I have arthralgia, but last blood ccp said low positive (rheumatoid I guess ain't seen her since results). L wrist has got so bad I had some carpal bones removed last Wednesday. I've been hanging out in the rheum section but switched 2 here because the surgeon hit me with a type of pennicillen in my iv and I realized on Friday all my joint pain was gone except a little in my R wrist. So I figure antibiotics shouldn't knock out rheum pain so I bet I've been right all along LYME. My wife is like a bulldog when looking up info on the net (I'm exactly opposite) and when checkin on lyme she saw there are about only 2 labs that do the test right. Could some of you tell me the labs you reccomend. And she saw that LLMDS have to be kept identy protected because of the establishment. I need to find one close to or in Mississippi. My wife found one in N.Y. that will help you treat yourself, he is Chinese and if I remember right it costs about 1800.00 which I can live with. But I'd prefer to see one eye 2 eye!

Anyhelp or info will be appreciated.

thanks

 

Posted 3/16/2011 4:50 PM (GMT 0)
You are talking about Dr. Zhang's herbal protocol. Are you interested in conventional treatment (antibiotics) or natural treatments? My suggestion is to see a LLMD and get a proper diagnoses and then go from there.

Self treating is possible, it's been done successfully by some, however, seeing a LLMD first and finding out what possible coinfections you have is always a good thing to do first. I personally prefer having a LLMD or LLND treat me than to do it myself.

Sorry you're suffering with the pain of what appears to be lyme disease. I hope and pray you find the path to healing that you feel is best for you. As you do your research, and listen to the different advice, input, and experiences that people have to offer you, I'm sure you will find the answers you are looking for.

There's some great people here who have a wealth of experience with this disease who will be more than glad to answer your questions and give you the moral support you need to get through this evil disease.

We are here to support you the best we can.

Gary
Posted 3/16/2011 6:27 PM (GMT 0)
Hi HogHunter:

The lab that many docs use is Igenex located in Palo Alto, California. Go with your gut instint and get tested. You can actually goggle them and see the different tests.

I happen to live about an hour from Palo Alto, so ordered their test kit (they will send you one overnight and no cost). I took it to my regular family doctor who signed the lab request slip then I had the blood drawn at the lab. Unfortunately, my lab results went back to my doctor who called me and said she thought the test was negative but would call the lab because she wasn't sure how to read it exactly. That was in November 2010.

Then, about 8 weeks ago, I looked at the test and realized it was POSITIVE for lyme with a co-infection of ehchrilsos (sp?). Anyway, I made an appt with an LLMD and started on antibiotics about seven weeks ago, and am feeling SOOOOOO MUCH BETTER! Most of my symptoms have subsided. It's unbelievable!

Anyway, so point is, you can order the test, but I would also find an LLMD who understands how to read them because there are many co-infections too.

I have spent almost a year thinking I had MS and have probably had every test in the book at UCSF.

What a relief!!!!!

Good Luck and keep us updated.
Posted 3/16/2011 7:22 PM (GMT 0)
And the sooner you get diagnosed and treated the better your chances are of beating this disease. Time is of the essence, don't put it off.

Gary
Posted 3/16/2011 7:47 PM (GMT 0)
Thank you both very much. I will try the LLMD as I'd rather be under a doc's care. How do I find one close to (or in) Mississippi? I forgot to mention I went to a nuerologist and got the shock test and I have neuropathy, she suspects one of two different genetic diseases, but I refused the dna test, don't want it to cause high ins. for my daughter and I think it's lyme anyhow. The lyme test she did said negative. I think I'll get a copy of the results. Igenex is where she wanted the dna done I think.
Thanks Again Everything
I write here is during talking to my wife so I may sound disjointed!
Posted 3/17/2011 1:42 AM (GMT 0)
Your brain would be fried.

If you've really had Lyme for 6 years... you would most likely be feeling all sorts of different symptoms to go along with your joint pain. Late stage Lyme not only affects you physically... but mentally and emotionally as well. Almost everyone I've talked to with Lyme (including myself) will agree that it makes you feel like you're losing your mind. If you are having persistent fatigue, anxiety, depression, brain fog, insomnia to go along with your joint pain... then Lyme is definitely possible. If you're only having physical symptoms and not mental... then probably not Lyme.

The mental symptoms are the most misunderstood part from people who have never had Lyme because it's not really talked about in the media... but it is a major part of this disease and would almost definetly be affecting your brain after so many years of being infected.

I mean... there's always a chance it could be Lyme. But I am just making my judgement based on what you described. I would probably listen to your Doctors in this case. Good luck either way!
Posted 3/17/2011 6:22 AM (GMT 0)
That's not neccessarily true MysteryLyme. I didn't feel bad right away. It took a few years until I started going downhill altogether. I think it all depends on ones immune system.
Posted 3/17/2011 6:26 AM (GMT 0)
hoghunter,

What kind of antibiotic were you on? Doxy, for instance, is known to help joint pain. I would still see an LLMD if I were you to be sure. Here is the information you asked for. If you go to an LLMD, they will send your bloodwork to the lab that they think is best. Most deal with Igenex.

Igenex Information:

You can order the Western Blot and Co-infections tests through Igenex. If you go to their site, there's information there that list what tests to order.

www.Igenex.com

Here is their contact information:

IGeneX, Inc.
795 San Antonio Rd
Palo Alto, CA 94303

800.832.3200
650.424.1191
650.424.1196 Fax
--------------------------------------------------------------------------------

Here is information to help you find a Lyme Literate Medical Doctor:

Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:
[email protected]

If you'd like more doctor suggestions, you can email stephanie at: [email protected] You can also go to: www.turnthecorner.org/bod.htm 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) doctor. The ILADS site is a great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

For great info and links, read the topic at the top of the forum titled,"New To Lyme?......Start Here!" It will help to get you started learning about Lyme Disease.
Posted 3/17/2011 11:45 AM (GMT 0)
Thanks very much to all of you.
GWB I appreciate your help!
Carrie 48 thank you and I am very happy you are better, folks don't really know how a person feels when something is basically eating you alive and not knowing what it is.
Mystery Lyme my brain ain't what it used to be, my short term memory is trashed, I don't have much fatigue but when I do it actually feels like I could lay down and die. I get dizzieness, but that could be from the prescription poisons I take, also am much more emotional than I used to be. Couldn't hardly talk to an orthopaedic one day was trying very hard not to cry, and man was that embarrasing. It was because of him telling me due to meds that I couldn't tolerate I was toast (Not a quote but what he meant!) and at that moment it hit me that whatever I had was actually going to cause my death. Have JOKINGLY considered putting a radio antenna on my head and standing on a hill in a lightening storm! My mind sometimes seems like a TV and the channel keeps changing.
CajunGirl thank you also for the info etc., I am a mudbug connisuer! (wish the forum had spell check!) People ask me do you really suck the heads I say heck ya I trow da tails away! LOL
Above post I mentioned disjointed, if it weren't for a computer and being able to edit and rearrange it would really be a trip reading my posts. And I didn't mention it was a couple years ago when my honey did the checking on lyme and found all the info.
(CG "What kind of antibiotic were you on? Doxy, for instance, is known to help joint pain.") It didn't help it killed it except R wrist and some toes and finger joints that feel like they were hit with a hammer. That tells me that the R ankle, hip, shoulder & knee, & both elbows don't have to much joint destruction. Had surgery on L wrist week ago and on way home R shoulder was killing me and I was loaded with pain killers, took my mind off the wrist! # weeks ago I told my wife I could not go back to work, done stood workin with the pain as long as I could but I see with the right antibiotic treatment I probably can after I get my wrist up and runnin again. The anti was some form of pennicillen, gonna find out next Wednesday at 2 week followup.
Now I will email and find an LLMD and go from there, I'll be checkin in with ya'll. For any of you that have joint p&i please go read about this
http://www.inspire.com/groups/stop-sarcoidosis/discussion/sarc-and-curcumin-a-possible-treatment-a-review/
it won't paste as a link 4 me???
Thank you all so much again!
Posted 3/17/2011 2:52 PM (GMT 0)
Hi Hog hunter,
Welcome to the forum!!! You would really benefit by reading through the thread at the top of the forum titled "New to Lyme?... Start here!", as it is full of great info & links put together by the members here.

Do you still need help in finding a LLMD?
Posted 3/17/2011 7:22 PM (GMT 0)
I totally agree with Cajun Girl. You can have had longterm lyme but your immune system may have been keeping it in-check. I believe I've had lyme for many many years. I have 20 lesions on my brain (not typical for MS). Right after my gallbladder surgery in Jan 2010, I started having CRAZY neuro symptoms..vibrating, numbness, you name it. No real joint paint though except for sore feet.

My LLMD said I may have had it for years (I did have a tick buried in my belly button when I was around 13 years old and I just turned 49). SO.....Your brain wouldn't need to be fried. I would check into it.

My LLMD said my immune system was most likely able to keep it in-check and then my gallbladder surgery kind of "did me in" and made the lyme go crazy.

Now, after 7-8 weeks of treatment, I'm feeling much much better and nearly all my symptoms have subsided.

So Happy!
Posted 3/18/2011 1:21 AM (GMT 0)
New here, reading the "New to Lyme" posts has given my a lot of info and question for me and my family Dr. to find answers to. I have been dx with possible MS and Central Nervous System Disorder for the past 8 years. Have had a slow progression of sensory symptoms, many lesions in my brain on 5 MRI's with no confirmed dx of MS, Evoke potentials negative, EEG's negative even though I have reactive body reflexes or spasms with sound, touch and movement around me, have not driven for 2 years because of these movments, other symptoms on the list for lyme. Have had the same neurologist for 8 years and just saw another one who ordered a lot of lab work and tests. What showed up on what I think is my first lyme test, B. burgdorferi EIA Reactive, B. Burgdorferi IgG Western blot and IgM Western blot Non-Reative, lab asked for another test 4 weeks, this one has shown the same and they have asked for another test in 4 weeks. That would be next week. Seems they tested for the same thing, not a new test. Does this mean I probably have lyme? Neurologist was not sure why I showed Reactive on one and not the others in the same test, directed my Dr. for me to see a Infectious Disease Specialist, a Rheumatologist for the arthritis info found on scan and MRI, a General Internist, and assesed in the Neuropsychiatric Clinic at local hospital. My Dr. and I are not sure why he thought I should be investigated by the Clinic. I'll wait on looking into that one. Blood work also showed B12 down, RBC flagged, glucose and cholesterol levels elevated. Not sure where to go from here. I live in B.C. Canada. Thanks for any help, Pinda
Posted 3/19/2011 4:56 AM (GMT 0)
Hi folks, it's benn a long day and I'm sleepy but checked in to read a bit. After reading above a light went on. I had surgery in 08 on the "old trapdoor". Maybe that kicked mine off?? Just yesterday I layed down for a nap and my right hand just flew up on it's onw from the elbow, have had a few movements like that in hands,fingers and legs in the past few months but not that strong. Also at times my muscles around my lips and now sorta tighten then relax I guess you'd call it drawing. Have not been very concerned though.
Well goodnite folks and thanks again for all the help. Just googled a Dr. Richard Furr I was told about and found his obituary, he was about 5 hours away. Doggone it!
Posted 3/19/2011 5:04 AM (GMT 0)
Oh yea, Traveler do you know of one closer to Ms. than Mo.?
Thanks
Posted 3/19/2011 11:26 AM (GMT 0)
I know of a LLMD in LA. You want his name?

Gary
Posted 3/21/2011 1:36 PM (GMT 0)
I sure do, that is a good bit closer than Mo. to me. There was one in south Ms. but sad to say he is deceased!
Thank Yo.
Posted 3/21/2011 2:04 PM (GMT 0)
I have the information ready to send you but I noticed you don't have an email address listed in your profile. The only way I can get it to you if you email me since we are not allowed to post doctor's names and contact info here on the forum. If you click my name you'll see my email address there. Just send me an email and I will send you the information on this LLMD.

Gary
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