Lyme Disease Support Group

When I returned home to Southern California, I made an appt with my primary doctor who I've been seeing for 15 years and I really like and trust.

My Igenex Lab tests came back and they were positive for Lyme - both the Western Blot and PCR test.

In fact, a week later, the Humboldt County Public Health Dept called me and said "we see that you tested positive for Lyme and we'd like to ask you a few questions."

(They wanted to know if I had the Bullseye Rash - which I didn't. Although I did remember a giant "bruise" on my leg which was really strange - but unfortunately I didn't take a picture of it)

My Primary admitted that he didn't know much about Lyme but would do some research.

At my next appt, he told me that Igenex tests were too sensitive and may not be reliable. He also made a point about them being a "private" lab vs. a non profit?

I've now had TWO LLMD's tell me that I'm Lyme positive and to my Primary's credit - he did put me on 2 months of Doxycycline which he said were medical standard for treatment.

After 2 months, I still wasn't any better - if anything, I was getting worse.

I am now being treated by an LLMD but want to keep my Primary in the loop. He's a very good doctor and he has been doing research on Lyme - however, he is very conservative and only goes by peer reviewed, published medical studies.

I can appreciate this, but every study I send to him about Lyme treatment, he says is either too old or not valid.

How can I find information about Igenex and Lyme treatment that he would consider valid?

(P.S. he has been great about trying to help me with my symptoms, such as nerve pain by prescribing Neurontin, etc.,)

broke up longer paragraphs for us neuro folks, emphasized as needed. bettyg, iowa leader

Post edited by: Bettyg, at: 10/19/2010 12:54 AM

Post edited by: sandiegolymer, at: 10/19/2010 09:11 PM

typical reaction i'm sorry to say which we hate it; here's several things for you to try ok

read tincup's explaination to lymeseek on IGENEX testing and the background of company! outstanding!

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/79309

i don't know if above has an actual letter written by someone saying they have top standards, etc. can't find what i want at my finger tips right now.

***************

dr. brian fallen had info published in PUBMED on long-term antibiotics. you might try finding that link in pubmed.

brian's ceo of usa's 1st LYME/TICK-BORNE RESEARCH LAB AT COLUMBIA UNIV, NYC

now idsa, infectious disease society of america, has patents/grants, a real monopoloy of tests and what is published and not published.

you're in the LYME WAR of 2 treatments: idsa, infectious drs.

vs.

ilads, intl lyme associated disease society aka our chronic LYME LITERATE MDS, LLMDS

idsa is recoginized by cdc; our ilads docs aren't.

health insurance goes by cdc; thus will NOT REIMBURSE us for our appts, treatments, labs, meds, etc.

please get THE BAKER'S DOZEN, LUNATIC FRINGE, JUNK SCIENCE BY PJ LANGHOFF, released last year....all about idsa infectious drs. saying 1 thing; doing another with over 1000 links of PROOF of what has been happening to lyme/co-infection community!

show him UNDER OUR SKIN lyme documentary; you can buy it at underourskin.com site or get from libraries.

that's what i can think of at this hour sandie, good luck!

if it's a recent bite, 3 MONTHS OF ANTIBIOTICS; 2 MONTHS SHOWING NO SYMPTOMS BEFORE STOPPING ANTIBIOTICS or you will end up with chronic lyme like the rest of us!

Also thanks so much for re-formatting my post - i have to admit - it's even easier for ME to read it now! You're good at this!

I will definitely check out the links you sent. BTW - i DID give my doctor a copy of Under Our Skin and he said he would watch it! I won't know until my next appt if he actually did - but I have hope!

I believe I was bitten in December of last year with symptoms showing up in January. I didn't start the antibiotics until 8 months of being sick and arthritis had already set in by this time. Was also starting to get horrendous nerve pain.

Now that I've tried my PD's method (2 months of Doxy - 100 mg 2 x per day) and nothing happened, I'm now back on my LLMDs method which is to start out with 200 mgs of Doxy 2 x per day plus Flagyl (which my PD didn't agree with) After a few weeks, my LLMD will add additional abx. So i'm crossing my fingers!

Thanks again BettyG for your help! - "Sandie"

Post edited by: sandiegolymer, at: 10/19/2010 03:52 PM

used quotes to enlarge text for neuro lyme patients like me. bettyg, iowa leader

Post edited by: Bettyg, at: 10/19/2010 11:05 PM

~~~RE your "My MD refuses to trust my Igenex lab results" When it comes to Lyme Disease,refuse to trust your MD.

~~~Twelve years ago my MD ruined my "normal" life! I found the tick and the tick bite.It was a nickel sized raised scabbed welt.

~~~He said it was not a bullseye rash.I said not everyone bitten gets one.He said OK we can test you.I said not every test shows positive.He said if your test shows negative,which it did,two weeks after that test we can do another.It also "showed negative."

~~~Back then I did not know any more than that and that a "negative" test could actually show positive depending on who looks at it.

~~~After a million negative other tests he sent me to an IDDr.Next mistake.She sent me for a million other negative tests and three more "negative" Lyme tests.By the time she decide to put me on abx,after ruling every thing else on the planet out,a year and a half had passed.Way too late!

~~~After six months and no relief I found a LLMD and he with a sixth Lyme test he clinically diagnosed me with Lyme Disease and treated for a year and a half with dozens of pharmeceuticals and still with no relief.Very long story short.

~~~Your Dr is staring at positive Lyme Disease test and is skeptical? Educated Idiot! ~~~RUN FORREST RUN! When it comes to Lyme Disease get away from him and don't look back!

```````~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey,Mitchell~~~

Post edited by: waxby, at: 10/19/2010 06:13 PM

~~~It is hard for all of us Lyme Patients to believe,in this day and age,with all that is now known about Lyme Disease,that every Dr,and medical school,on the planet has not been allerted and made aware of the seriousness of this disease.

~~~And any one coming to them with suspected Lyme Disease,pointed to by the vast array of symptoms and "only partially" positive Lyme tests,and so considered negative,

but should be considered at least suspect,should be immediately sent to a specialist,a LLDr(Lyme Literare Dr),who should not be persecuted for dealing with a clinically "clear" portrait of Lyme Disease,

and should be completely supported by the medical community as highly respected, valued, and important specialists in the field of Lyme Disease,just as any one suspected of having cancer is sent to a specialist.

```````~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey,Mitchell~~~

Post edited by: Bettyg, at: 10/19/2010 11:09 PM

10/19/2010 06:59 PM

Posts: 2

New Member

I'm in medical school now, and we are literally taught zilch about Lymes disease.

reply: with all due respect, here are my thoughts on your post here. 1st we have LYME with no s on end disease named after LYME, CONN.

the dr. may be responsible for their education, but i disagree with you since i was misdx for 35 yrs. out of my 41 yrs. ok!

when we know more than the dr. who has gone for years for big bucks; then we need to educate them taking our "evidence".

again, it may be THEIR responsibility to find the answers for our illnesses, but since we are being HERDED in there like cattle for our 5-10 min. max; it's OUR responsibility as a patient to get OUR MONEY'S WORTH by educating them with their pubmed info, etc.

I appreciate how you would like to educate your doctor about this, and how he is willing to read things, but the bottom line is that HE is responsible for his education. NOT YOU.

You need appropriate treatment. If he has a patient with something he doesn't get, it's HIS responsibility to find materials that HE believes are suitable.

Looking at the breadth of knowledge available though, not everyone can know it all about one subject.

He may be a fabulous PCP, but you definitely need a specialist's management. Good for you for getting appropriate help.

reply: my wish is you'll become a LLMD to share your knowledge and 1st hand experiences with all your patients honoring the DO NO HARM TO PATIENTS.

now i'm off my soap box thanks for sharing your thoughts and allowing me to share mine also. hugs /quote]