I recently tested positive for Lyme disease through IGeneX labs western blot. My PCP started doxy treatment as soon as results came back positive. I have been on doxy 300mg per day and after 8 days I feel great!!! No herx and symptoms are quickly dissapearing I haven't had to take a daytime nap the past 2 days after napping daily for the past year. Muscle/joint pain almost gone totally, can walk up stairs, bend over and get out of a chair with ease. Irritability gone, I feel almost giddy!!! Short-term memory improved greatlly as has libido and sense of humor!!! I can't beleive it!!! Yahoooooo!!!

Awesome Susie!!! Congratulations.

Hey that sounds like a dream come true. Why do regular Doctors always turn me down when I ask for a test, I have tons of symptoms? We have spent so much money on Doctors, labs, surgeries and meds , now the gluten-free food ( to tiered to shop) so I get the ready made stuff for now. Any way how can I get my Doctor to test me? He says your symptoms are not indicative of........ fill in the blank. I had to self Dx Celiac before he ran the test.

I ordered western blot from IGeneX labs.
when kit came I dropped lab slip off at my dr office and called later in the day and receptionist said it was signed. I took whole kit and lab slip to my local hosp. where blood is drawn, the phlebobomist drew blood and they even had it picked up at hosp. by fed ex. two weeks later results were in Positive and Dr perscribed doxy. She had said previously that Lyme was probably not what I was suffering from as there is no Lyme in NY. And if I wanted to have rheumatologist give me blood test next visit I could. Of course rheumy would have ordered standard test.
Try ordering western blot and give Dr lab slip!! hth

YAY, YAY, YAY!!!!!


Please see the Lyme Disease thread under Leaky Gut on this forum about testing ..... regular docs generally will not test for Lyme, or if they do will not use the right labs. There is a political battle within the medical field regarding Lyme much like the one in the dental field regarding mercury.

Yes, unfortunately when it comes to some conditions like lyme, we are mostly on our own. I was very very fortunate to have gone to my LLMD without a clue I had lyme, for help with the chronic pain. I was hoping for guidance for taking some supplements that might ease the pain. He immediately suspected lyme, later confirmed via testing and clinical response.

I am very grateful.

But a number of people have been quite successful ordering the kit first and asking their doctor to run it. Hope this might work for you.

I think the reason for this is because the insurance companies are left out of the mix when patient orders and pays for test kit out of pocket.

Yes, IGeneX expects to be paid up front ... but having the kit sent to you (you still have to have a doctor send it in), insures that they use the right lab. No matter if the doctor has the IGeneX kit on hand like my LLMD does or if you have it sent to you, either way, you pay for this test up front.

But well worth the money!!!

Yay Susie!!!!! I am sooooo glad you are feeling better!!!!

Thank you all for your good wishes!!! I am continuing to feel improvement although not back to my old self yet by any means. Am praying for continued recovery and think that I may have gotten lucky. It is possible I do not suffer from coinfections as so many on this forum do. I worry that when my PCP decides to stop antibiotics I will revert to suffering symptoms again. I printed ILAD reqs for her that clearly state treatment should continue even after symptoms dissapear. I am afraid she will follow typical protocol and not be receptive to following up with continued abx

Great News Susie!!!

How much does the kit cost up front?

thanks
mamaw

Mamaw,

I believe it's around $200 for the Western Blots (IgG/IgM). Both would be needed.


Susie,

I usually just read along on the lyme thread........great to hear you are doing so much better.

Susie, if you are forced to quit the antibiotics you should most likely get yourself onto an herbal protocol rather than going without any treatment to try to help prevent the relapse that is common.

Sherry

thanks Sherry, I saw my PCP last week and I feel that she may be willing to continue treatment until symptoms are gone. She will happily refer to me to a LLMD a few hours away that I learned of through this forum.
We agreed that as long as the treatment she is providing is working then I don't need LLMD right now especially as my insurance won't cover the cost. I would like to know more about the herbal protocol though as I am feeling so good right now it would probably be a good time to start herbal treatment. My PCP is being pretty cool about the Lyme so far
I have been feeling really good lately, I even ate enchiladas at a local mexican restuarant 3 days ago and no reaction at all!!! I am sure there must have been some cc as the cook didn't even know what gluten is and I could not explain because of language barrier. I haven't eaten anything that I haven't cooked myself in almost a year now! It was so nice to have a waitress and a cook, and the enchiladas were awesome!

I can't believe that this thread may be the answer to all my problems.

I lived in Maine 3+ years ago and now live in western Colorado. Maine=mod/high risk for lyme and Colorado no/minimal risk for lyme. I've been tired for years now. A current prednisone course is helping with the joist pain. I've tried to come off the pred twice in the last 3 weeks with return of nearly debilitating total body/joint pain, among many of the other lyme symptoms. I will be ordering the Western blot from IGENEX ASAP and will be TELLING my doctor to sign the form.

I will be moving to Denver as soon as I sell my house in Grand Junction, are there any lyme disease specialists in either of these areas.

I've been in health care since the age of 20, and will be 40 this year, as a respiratory therapist and a registered nurse. I can tell you many MDs are very overworked, underpaid, and just don't give a sh*t. Just think of the worse student in school you can remember and that could be you MD, you'll never know!!! The current health care system is in a very bad way at the moment. Look at todays news 2 different people die in an emergency room with on looking health care professionals, it's disguising. Thanks to the internet we(the public) need to almost take care of ourselves these days. I saw my MD twice in the last couple weeks for a total of $150 for less than 5 minutes each visit.

A BIG thanks in advance if my testing helps me to get the RIGHT treatment, finally.

I'll be calling IgeneX in the morning, but some questions.

Did you call before ordering the tests?

Why did you go straight to western blot or did you also do ELISA?

I don't have lyme, but would say if money is an issue that the western blots are definately more important. Lyme can cause intolerances on it's own. An IgG ELISA may be beneficial to pinpoint foods to begin with, but may not be accurate if it's a compound in foods and not the food itself that is causing the problems.

I agree with your assesment of most Dr.'s lack of caring about patients. I am fortunate to live in a small town where everyone knows everyone else and my PCP is a community member whose patients are her neighbors. I think the lack of caring comes from the impersonal nature of large communities. It is not just Dr's that don't care about fellow Americans, look at the news report of the gentleman hit by car as on-lookers watched and just kept going. I think it is vital to the future of the U.S that people start looking out for each other because big business, including the health care system, and our government, sure isn't going to. Thank God for small-town America!!
I understand that the western blot is the most sensitive Lyme test available and that is why I ordered the IgG and IgM from IGeneX. Call and order the test kit, have it sent to your home, no cost untill you send blood samples back to the lab.

The lab wil not process your sample without payment included with samples. The people at IGeneX are very helpful, and you can call them with any questions that you may have. If you can include your Dr.'s fax number on the form then results can be obtained faster then if they have to be sent snail-mail. hth

I am of the opinion that my gluten intolerance is a complication of Lyme and not celiac or a true food allergy/intolerance. As a matter of fact, after 5 wks of antibiotics treatment for Lyme, I actually ate in a restaurant where I know that cc was an issue and have not had a reaction!! Many of my Lyme symptoms have lessened in severity since treatment began including muscle/joint pain. Not yet brave enough to intentionally gluten myself and see if I can tolerate gluten now, too much going on in my life right now to suffer from a major reaction.
But, I will be intentionally ingesting gluten as soon as I know I have a few days free of any obligations.

Susie,

Were you diagnosed with celiac by colonoscopy? I had a colonoscopy in 2001 and the GI said I had celiac disease. I'm guessing I do have celiac, because I didn't live in Maine till 2004. I was in Colorado from 1999-2001, Saudi Arabia 6 months of 2001 then back to Colorado, early 2004 to fall 2004 Maine, and have been in western Colorado till now.

I would almost bet ever penny I have that my IgeneX western blot will come back positive for Lyme.

The weird thing is that I glutened up at Burger King several months back with no real celiac symptoms?

If you do in fact have celiac or a known gluten intolerance with a celiac gene then you would definately need to remain gluten free. Sherry is one who has celiac and lyme. There are others (like Carla) who don't have the celiac genes that are doing fine on gluten now.

I'm not sure why the GI would tell you that you have Celiac based on the results of a colonoscopy??

The damage caused by Celiac is in the small intestine...and cannot be determined via colonoscopy.

You would need an endoscopy/biopsy....not a colonoscopy.

Sounds like you were misinformed by this GI.

Dear Rachel,
That would explain why the GI doctors missed mine. I had a colonoscopy, endoscopy, intercolisis, gastric emptying study and blood work done when I was up at IU Med in 2001. I bet anything they did not do a biopsy, because that GI doctor was convinced there was no way I had Celiac. She also told me you cannot poop out food whole. We all know that is wrong! Doctors are so arrogant, and they think they know everything! It is absolutely infuriating.

Sincerely,
Jin

Jin,

Your signature says that you had a negative biopsy in 2001....so I had always assumed that it was done when you had your endoscopy??

Rachel,

A colonoscopy is an endoscopy. A colonosope is the longest of the scopes that go through your rectum. There is a sigmodoscope, but that is only to exam the lower colon. When you go through your mouth that is call an EGD.

I had both a colonoscopy and EGD in 2001 at which time my GI said I had celiac.

Susie,

I've done lots of research in the last couple days and I would refer you to the following link http://www.ilads.org/burrascano_0905.html. According to my hours of reading doxy will not solve your lyme problem if you are considered "Chronic", which you are based on your posts.

I will be doing my western blot through IgeneX early this week. I'm waiting on the lab reqs.

If you did have a positive celiac test you have celiac disease. All my celiac testing was negative, so once I corrected my leaky gut by getting rid off the various bad bacteria there my food intolerances cleared up.

I take lots of herbs with my abx. I am on the Cowden Protocol (www.nutramedix.com). I also just listed all my supps today on the OMG thread, so you can see what else I take there.

With Lyme treatment, it's important to rebuild the immune system as well as get rid of the bacteria. The Dr. B guidelines linked in a previous post are GREAT.

I'm sorry, but a colonoscopy is not used to diagnose Celiac Disease. Please feel free to ask other board members which tests are used to diagnose Celiac Disease.

Perhaps I should have stated upper endoscopy.....because that is how the the GI reaches the small intestine. The colonoscope cannot reach the small intestine.

I dont know why your GI performed the colonoscopy and I dont know why he told you that you have Celiac Disease when he was finished with the procedure....but as you can see from my quote (below)....that is not how the endoscopy for Celiac Disease is done.

Here is a complete explanation of how the endoscopy is performed and how celiac disease is diagnosed.

Dear Rachel,
As far as I know, if they had taken a biopsy, it was in the colon. After I got home, I had the printed out report of the testing done. There was no mention of a biopsy being taken, especially not during the endoscopy. I assumed they had taken a biopsy, but considering the content of the report, it is doubtful. Thank you for posting the information about Celiac diagnosis!

This clears up a lot of suspicions for me. I always knew they could not have even explored this possibility.
My doctor was so arrogant and sure she knew it all, that she refused to believe Celiac was the cause of illness. I am not sure I will ever mentally recover from the horrors I experienced at that hospital. Even worse was the report primarily described my behavior to be hysterical and such. Anyone reading that report would assume insanity instead of looking for a physical cause of illness.

I was only 18 years old, in a strange town, and was severely drugged. My blood sugar was also low. Who would not be terrified? I had a nurse threaten to pour the Golightly solution down my throat with a tube because I was having difficulty getting it down! I could not figure out why my parents would allow them to do such a thing, only to find out much later that they were not told what was going on.

I remember walking down the hallway with the IV attached and it was a long hallway. They transported me in an old wooden wheelchair that Roosevelt himself could have sat in! The same man who served food also did housekeeping as well as transport. I ended up having to be catherized due to not being able to go to the bathroom on my own, and many of those nurses obviously had no idea how to insert one of those things. By the time I got home, I had no urine coming out, only blood.

I had a terrible infection. Now, here is the kicker: This team of geniuses of about ten or so doctors could not figure out why I had dropped from 87 to 84 pounds after being there for four and a half days when I had only been living off of Jell-O, juice, and broth. After all of this hell, they concluded that I just had an imbalance of serotonin in my brain, making me feel sick when I am not. I would like to point out that pretty well everyone in the U.S. has a shortage of serotonin due to not getting enough sun or Omega-3 fatty acids.
Naturally, I was then placed on Celexa. The side effects alone are frightening, but trying to get off of a Selective Serotonin Re-Uptake Inhibitor is nearly impossible.

All of the research I have done on this class of drugs has revealed nothing good. I found out many of those teenagers who were involved in school shootings had been placed on these pills only about two or three weeks prior to the incidents. Something tells me this is not a coincidence. If anyone attempts to go off of them suddenly, withdrawal can be unbearable. They had me on Paxil as a teenager, and even being weaned the withdrawal is horrible. Oh, and let us not forget to mention that suddenly stopping these medications can result in suicide.

In my opinion, SSRIs should be banned. They are too dangerous and addictive. I knew what they were getting at up at the hospital when the Chief Resident started talking about his identity crisis in high school. Yes, you read that right. WTH? Fast-forward to seven years later. I am still on this awful pill I feel I may never get off of. I am no less depressed since my emotional state is due to dealing with health issues that were never resolved (due to what those morons wrote), and a family that refuses to accept or understand the situation. My parents will believe anything an idiot in a labcoat with an MD after their name.

Others' experiences on this thread do not surprise me one bit. Of all of the doctors I have seen, the GI doctors seem to have the worst egos. They look up people's butts all day, so I really do not see how they have the right to look down upon the rest of us! Perhaps they should be reminded of that. One thing is for certain, and that is when I get my answers, a lot of doctors are going to get some very nasty letters. It is time these people get educated!

Sincerely,
Jin

Rachel,

I did have the EGD(or upper GI endoscopy). The reason a colonoscopy(lower GI endoscopy) was performed was because they were both done back to back under the same anethetics on the same day.

Sorry for the miscommunication.

Jin,

I feel your pain with regards to the doctors and medical system. I've worked in hospitals for the past 20yrs. Many doctors are not very good, not even at their specialty. My respiratory education was a 2 yr A.S. degree, and I would challenge almost any doctor, any where, and any time when it comes to mechanical ventilation(the respirator).

I HAVE NO FAITH IN MOST DOCTORS OR HOSPITALS. THIS IS EVEN MORE CONFIRMED AFTER READING ABOUT THE MANY EXPERIENCES ON THIS AMONG OTHER FORUM. READ, RESEARCH AND INSIST ON THINGS WHEN YOU SEE YOUR DOCTORS. AT 6'5' AND 240LBS I CAN TELL YOU DOCS GIVE ME WHAT I TELL THEM TO GIVE ME. WE NEED TO FIGHT FOR OURSELVES, AFTER ALL IT'S OUR LIFE NOT JUST A PAYCHECK!!!!!!!!!!!!!!!!!!!!1

Dear souzahanson,
It is truly sad how the medical system works. The tragedy is that doctors also tend to bully nurses into doing things that is not good for the patient. That is likely the reason I was treated the way I had been at IU Med. Nurses and Techs were terrified of this doctor. You should have seen their faces when I told them who my doctor was when they asked!

They would make this face automatically, as if it were a reflex. You know the "Oh God, not her" look? My mother worked at a hospital for nearly five years, and she got irritated by the doctors' attitudes toward staff members they saw as lower than themselves. I also am annoyed at the way a doctor will believe anything another doctor writes about a patient, just because they are a doctor! Doctors also will take up for another doctor even though they do not know them! This form of solidarity is absurd.

You are fortunate to be so tall! I thought I had half a chance, since my father is 6'2. I cannot help but wonder if I could have been tall had I been diagnosed sooner. At least I was luckier than Mom. She is only 4'11 1/2! I just recently grew 1/4 inch, even though I am 25! I will take what I can get. Incidentally, my new doctor is 6'8!

The health issues you have sound similar to mine. Nausea and fatigue are my worst two symptoms. I am now seeing a chiropractor that finally seems to be in sync with natural health and what is actually going on. He is also open to the fact I may have Lyme complicating everything. At this point, he feels I have gut damage and am severely malnourished. Another wonderful thing about him is, he does not have a "here is a pill" mentality.

Sincerely,
Jin

Jin,

Keep up the fight. Research, read, and Google everything. When I went to see my doc late last week I went with ammo in hand about lyme. He did not try and sway me away from the western blot test. He actually said I didn't need to make an appointment once my IgeneX lab req came in, he said just come in and he will sign the req. If you go in with knowledge and ammo, they'll get scared that you may want to sue and will usually cave in to your demands.

Another thought for those that have HMO insurance. The less you doc orders on you the more they make from the insurance company.

Based on my symptoms multiple sclerosis is also a consideration. I'll cross that bridge after and if my lyme results are negative. Check out wrongdiagnosis.com

I printed the guidelines today to give to my PCP and hope that she will read them. I have been very careful to try to follow them myself, eg. no sugar, carbs, no caffeine, alcohol, daily exercise and daily rest, I continue to improve and am having more good days then bad, not sure how long this will continue on my current abx but as long as I feel good then I will continue to put off seeing LLMD as my insurance will not pay. I will check out the Cowden protocol thanks for the website address!!

I have a clinical celiac dx, had a colonoscopy at start of symptoms but no biopsy was done, all celiac testing has been negative, but I have not done genetic testing yet.

I agree completely!! But I cannot deny how good I feel now that I am on the doxxy at this point I am trying to heal with lots of H2O, magnesium, B12, Amino acids, omega 3, D3, rest, and exercise in addition to the abx. At this point I cannot afford LLMD and hope to not have to go that route. I will be checking the Cowden protocol for herbals to help in the healing process. Right now I am just glad to be able to sleep through the night and get up and be abe to weed my flower beds and do the word jumble in the paper without total confusion! One day at a time