hello everybody.

From what I understand, Lyme is more of a clinical diagnosis and may still be present even if tests are negative. I had several tests done recently and ALL were negative by the standards of the test, even though I had several "bands" present that are specific to Lyme, and I have a co-infection, mycoplasma. So even though all of my tests were technically negative, all of my symptoms and history of tick bites led my doc to begin treatment anyway.

I'm sure someone here will have a doc in your area. Don't settle for a doc that won't take your suggestions seriously. I was treated like a hypochondriac for 12 years until I finally found a Lyme-friendly doctor who referred me to an LLMD. Shame it took that long. I'm about to turn 24 and over half my life has been spent feeling ill for no apparent reason :(

Hi Infjlady!
Welcome to our forum! I am so sorry that you even have to look into having Lyme Disease! We can help you find answers to your questions though!

Alaskah was right - only about 50 % of those who are infected with Lyme Disease will actually test positive. These bacteria are quite capable of hiding from our immune systems - and that's what the current tests are looking for, a reaction by the immune system. Not to mention that there are at least 100 different strains of Lyme in the U.S. and the tests only look for 3 - 5 strains.

Most docs don't even know what to look for, so unless you are very lucky to have a doc who actually knows what he/she is looking at, they won't give you the kind of abx or the strength that you really need. This is a huge controversy within the "Lyme World".

Infectious Disease docs don't even believe that there is such a thing as chronic Lyme (even though there are thousands of us with it!), and they won't use the strength of abx that is needed to actually kill the bacteria. They also won't give the abx for long enough to actually put this infection into remission, so we don't encourage any of our members to see an Infectious Disease doc, we like to see our members go to a LLMD (Lyme Literate Medical Doctor).

They are willing to diagnose clinically (by symptoms) which is what the CDC says to do, and they use the science-based protocols that have worked for many, many patients. If you would like more info on this I can provide links for you.

If you haven't already, it would be beneficial for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of relevant information, symptom lists and informative links that have been put together by our members here! Most of those who have read through it have said that it was very helpful!! We also have a pretty good search function on this forum to help you narrow down your search for information from past posts. We must be our own health advocates now and the best thing to arm yourself with is knowledge!

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]

You can email Stephanie at: [email protected] 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) doctor. 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

i know everyone is different, but how much time? one month, six months, nine months?? or is it more like 12 months?? what is one to expect?

Hi infjlady,

Kramberry has it right that the longer you have Lyme, the longer the treatment will probably take. However, everyone is different and you have youth on your side.

The important thing is to get effective and complete treatment. You must be treated beyond the point that symptoms cease. It has also been found that the "low and slow" method is the best for your immediate health and to prevent relapses in the future.

We can't lie, there will be some hard work for you ahead. The rewards are worth it, though!

This is a great place you have found for information and support.

Keep us posted!

Carrie,
Is that Dr an Infectious Disease Doc? If so we really don't like to refer people to ID docs - unless someone knows that they follow ILADS treatment guidelines rather than the IDSA guidelines.

Here is a link to a really informative pdf file that I think we should all be aware of. It's called "War on Lyme Patients" written by Douglas W. Fearn of the Lyme Disease Association of Southeastern Pennsylvania, Inc.

www.lymepa.org/War_On_Lyme_Pts-quotes_B_W.pdf

It can be a real eye opener for some.

thank you, all. will complete my profile within a few days.

traveler: thanks for the welcome....wish i didn't have to be here, no diagnosis is frustrating. but an mnd diagnosis is depressing. but glad i now have hope.

alaskah: thanks for the advice. can you tell me the names of all the tests? contacted my neuro and he'll send a lab slip to me so i can have done in sacramento. but, i'm concerned about being tested negative and having to keep asking for another test, then another, and another... i already feel as though time has been wasted. glad to hear you're doing better.

kramberry: thank you for the time-frame. to some a "while" might mean a month...to others a year.

carrie48: there'll probably be more than one dr. harris. do you have a first name and/or location? and, my neurologist is in san francisco at ucsf. it's not a problem to go there and maybe my neuro and the doc you see can work together. please, please, please share the name?

achievinggrace: hard work??!! i thought i was through with that when i retired! ha!

i know i'm supposed to learn a life lesson from all this...

infjlady: My neuro is at UCSF too.... I am seeing a doc in San Francisco (sorry, I can't post his name here - he is very well known, so if you google "Lyme Doctor in San Francisco" his name will come up....I just did that and it came up. It is Dr. S.

My neuro and lyme doc do not work together....I'm not really sure that many do. My neuro did ask me after reviewing my MRI if I'd had Lyme Disease. At the time, I said no, because I hadn't been tested by Igenex yet. They did lyme testing during my lumbar puncture, but it was negative as I guess most are. But, I had a feeling that he was suspecting lyme disease based on his reaction from the review of my MRI. I hope it's okay to post my neuro doc because, well he is a neuro. It's Dr. West...is that the one that you are seeing?

Actually, I don't know! I would think if this doc is the head of Igenex labs that his name would already be out there quite a bit! So by sharing his name and contact info here, no one would be adding any unnecessary exposure I would think. Sorry!! I had no idea that this doc was already well known - that's why I didn't want to just go in and edit your post. I really don't know about very many of these LLMD's !

I will have to get my paperwork from my mom to let you know what tests I had done, there were about 5 or 6...my mom was trying to submit stuff to her insurance but when I get that back I'll let you know what I had done. Of course, none of the tests were 100% accurate. I believe a peptide one was only positive in 40% or 60% of people who actually had Lyme, so you're still likely to be negative with that even if you have it. What my doc really looked at was what bands I had present. Some bands weren't "strong" enough to have a positive reading, but since they were still there, and they were specific to Lyme, that was enough for him.

There's not much point in running test after test...even if you don't have Lyme, you're likely to have a false positive just by mere chance at some point. If you do have Lyme, your doc should look more at your symptoms and not use the test like it's 100% accurate 100% of the time. If he won't, then find another doc.

Have you ever been on a trip or lived anywhere where Lyme was more common? I hate when doctors say, "Well that isn't common here..." because they don't know your life history. And even if it's not *common,* that doesn't mean it is impossible to get. You might be that one rare case. I think that's why my arthritic symptoms were overlooked for so long...I was "too young" to have arthritis.

Even the CDC states "Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods."

www.cdc.gov/lyme/


Lots of our member have used Igenex Labs (igenex.com/Website/), but they are not the only lab that specializes in testing for Lyme and other tick-borne infections. Try googling the terms "Lyme Disease Labs" to find one that hopefully your doc will work with.

Actually, yes, Colitis or UC as it's commonly known as, can be from Lyme disease.

From "When To Suspect Lyme" by John D. Bleiweiss, MD

cassia.org/essay.htm

"Constipation severe enough to cause fecal impaction can occur. Many LD patients will experience a spastic (irritable) colon and that diagnosis should spark a search for LD. I have treated LD attended by ulcerative colitis with substantial remission of the colitis when antibiotics were inaugurated. Fecal incontinence due to impaired rectal sphincter tone can occur. Dr. Martin Fried has demonstrated Bb spirochete in the gastric and duodenal mucosa of children with LD who complained of abdominal pain and who were documented to have gastritis and/or duodenitis. It is appropriate to work up LD when confronted by these clinical entities."

I would also suggest that you do a search here on this site for "Lyme disease, colitis" as I know that this has been discussed quite a few times.