LC and Lyme

Christine · Post by **Christine** » Wed Jun 06, 2012 9:19 am

Haven't been on in a while and happened to notice some newer posts pertaining to Lyme. I recently started seeing new doctors that deal with hard to treat patients that don't respond well to the usual treatments. They saw evidence of infection in my blood work from the past 6 years that everyone else skimmed over. The first thing they suggested was testing for Lyme . Sure enough I came back with a very low cd57 and a high VEGF. They believe that the autoimmune issues I have are Lyme imitating other diseases. I am in the process of breaking down the biofilm that protects Lyme before testing for the specific co infections. Many people get false negatives with Lyme testing because of how well protected it is by the biofilm. It seems that gluten sensitivity goes hand in hand with Lyme as well. I have yet to come across someone with Lyme that can tolerate it. Another interesting thing about Lyme is it's involvement with Hashimotos. Lyme likes a cooler environment so by attacking your thyroid it can keep your body temp down. I find that even with great thyroid numbers now that I've started going after the Lyme my basal body temp has gotten lower. If you have several autoimmune issues that just don't respond to treatment as you'd expect Lyme is worth testing for. Just make sure you go to a llmd that knows what they're doing and which labs to use. For the record, I never knew I was bit by a tick and never had a fever or rash. I think that in the future they'll find out Lyme is a way bigger problem than anyone thought.

Zizzle · Post by **Zizzle** » Wed Jun 06, 2012 9:48 am

I think that in the future they'll find out Lyme is a way bigger problem than anyone thought.

I couldn't agree more. It's frustrating to see so many people fighting for a diagnosis of chronic fatigue, frbromyalgia, etc, etc, when there is a strong likelihood it could be Lyme or a related infection. I'm a firm believer that immune suppressing drugs like prednisone make people with AI diseases worse in the end, because whatever hidden infection they are carrying gets to proliferate while the immune system is tamped down. You might be interested in this organization helping people treat RA and related conditions with pulsed antibiotics.

www.roadback.org

Deanna in CO · Post by **Deanna in CO** » Wed Jun 06, 2012 10:08 am

Christine,

This is fascinating - especially the part about gluten sensitivity going hand-in-hand with Lyme disease. In my area the doctors' byline is, "There is no Lyme disease in Colorado," but I know several young people who've had it. One in particular is struggling deeply with it. She was originally diagnosed with juvenile RA - eventually they figured out that wasn't it, but she still has terrible pain. And they're pretty confident the basic problem is Lyme. I think I will bring up the gluten issue with her mom, who's a pretty good friend. Maybe going off gluten would reduce her pain in the long run.

Thanks so much for posting this!

Deanna

CathyMe. · Post by **CathyMe.** » Wed Jun 06, 2012 2:27 pm

Christine, thanks so much for posting this. I just had a conversation with a friend who has another friend that was dealing with all sorts of symptoms, some similar to mine (hormonal) and they finally tested for lyme disease and sure enough she has it!! She went to all sorts of specialists, had all sorts of tests done and no one could figure it out.

mzh · Post by **mzh** » Thu Jun 07, 2012 6:44 pm

Everyone should be aware of this site. lymedisease.org

Boy, it's hard to find a doctor who will even consider a tick borne disease, never mind one who knows what a full tick panel is. Plus, the CDC keeps going after licenses of docs who try to treat chronic Lyme. It's a mess.

Zizzle · Post by **Zizzle** » Fri Jun 08, 2012 11:07 am

Here is a long essay detailing all the symptoms and medical conditions that can be caused by Lyme Disease. If true, one would suspect 90% of the people on this Board have untreated Lyme. I certainly qualify, although my symptoms would be considered mild on the Lyme suspicion spectrum. I've long believed that MC and it's associated autoimmune conditions have a microbiological origin. I'm not ready to say Lyme is THE one, but it certainly could be the one for some people. What does that mean for next steps, considering Lyme is so difficult to detect?

My doc ordered a Lyme test a few months ago along with others, and I never went to a lab to get them done. I think I'll do it now.

http://cassia.org/essay.htm

mzh · Post by **mzh** » Fri Jun 08, 2012 2:38 pm

BTW, Lyme spirochetes have been found in intestines and gallbladders. God knows where else it can sequester. When it's sequestered, the blood tests are negative. I know this because we've had retired racing greyhounds with both Lyme and Babesia. They have it, then they don't -tests were negative but they were still sick b/c it was sequestered somewhere - then it comes back 100 times worse than the initial manifestation.

Zizzle · Post by **Zizzle** » Sun Jun 10, 2012 11:19 am

Wikipedia has an interesting discussion about "chronic Lyme" on their Lyme Disease page. It seems like a major war within medicine. The believers in chronic Lyme seem to have little scientific evidence on their side. I note that minocycline and doxycycline seem to have anti-inflammatory effects, separate from their antibiotic action. Could this explain why people feel relief from pulsed antibiotics? Or could these antibiotics be suppressing other symptom-causing bacteria, and not Lyme? Perhaps a different parasite is to blame?

http://en.m.wikipedia.org/wiki/Lyme_disease#section_11

mzh · Post by **mzh** » Sun Jun 10, 2012 12:02 pm

Zizzle wrote:Wikipedia has an interesting discussion about "chronic Lyme" on their Lyme Disease page. It seems like a major war within medicine. The believers in chronic Lyme seem to have little scientific evidence on their side. I note that minocycline and doxycycline seem to have anti-inflammatory effects, separate from their antibiotic action. Could this explain why people feel relief from pulsed antibiotics? Or could these antibiotics be suppressing other symptom-causing bacteria, and not Lyme? Perhaps a different parasite is to blame?

http://en.m.wikipedia.org/wiki/Lyme_disease#section_11

Doubt it. All I can tell you is that a greyhound we had had Lyme; his titer was 32,000. He was treated with amoxicillan for 2 months. His titer dropped and he felt much better. Two years later it was back; his titer was 100,000. More treatment for months and it finally went to zero. But by then his kidneys were ruined and we had to put him to sleep because of that. Lyme does that to kidneys.

My husband had it bad too (100,000 titer as well). He has pretty bad joint pains now, 30 years after his diagnosis.

I suspect the reason there is no scientific evidence is that no one actually asks those of us who have dealt with it in real life. We had another greyhound who went through it twice just like that. It becomes sequestered and they come out negative when tested during that phase. It's the pits but it's very real, no matter what the CDC proclaims. I know its hard to put it to a scientific test when all the sufferers are not in a lab study, just at home trying to deal with this miserable disease. One has to ask why it hasn't been done. Too hard, I guess.

Marie · Post by **Marie** » Mon Jun 11, 2012 2:50 pm

Christine,

Which tests did you have done to determine Lyme Disease? Also, what type of doctor helped you? I have Celiac Disease, Lymphocytic Colitis and Hashimotos Thyroid Disease. I realize Lyme Disease can mimic those autoimmune conditions, therefore I want to get tested. However, I've read that Lyme Disease can be very difficult to diagnose-- that's why I was wondering what tests to have done.

Thanks for any input!

mzh · Post by **mzh** » Mon Jun 11, 2012 4:12 pm

Marie wrote:Christine,

Which tests did you have done to determine Lyme Disease? Also, what type of doctor helped you? I have Celiac Disease, Lymphocytic Colitis and Hashimotos Thyroid Disease. I realize Lyme Disease can mimic those autoimmune conditions, therefore I want to get tested. However, I've read that Lyme Disease can be very difficult to diagnose-- that's why I was wondering what tests to have done.

Thanks for any input!

I'd love to know too!

Marie · Post by **Marie** » Thu Nov 22, 2012 12:57 am

I went to a lyme specialist and he ran a battery of tests. One of my western blots done by Igenex labs came back positive so it appears lyme is playing a role in my situation as well. I explained my hesitancy to take antibiotics since long term use of them for bladder infections likely gave me colitis. Not to mention that the lyme likely played a part in my chronic UTIs. Some have had success with Diflucan for lyme. Since I was already taking Nystatin to help with yeast overgrowth, my doctors agreed to switch to Diflucan in an attempt to control both the yeast and they lyme at the same time.

mzh · Post by **mzh** » Thu Nov 22, 2012 7:50 am

Marie

Where in Florida are you? Finding a Lyme-literate doc is next to impossible here in SC. I would drive to Florida or anywhere in the SE to find out if Lyme or another tick borne disease is an issue for me too.

Marcia

Polly · Post by **Polly** » Fri Nov 23, 2012 7:11 am

Lyme is endemic in my area (mid-Atlantic). About 8 years ago, 10% of the homes in my neighborhood had a family member with diagnosed Lyme in one season. My niece's hubby has been treated twice for Lyme disease in the past 2 years. A word of caution......I believe the several weeks of doxycycline that I took for suspected Lyme (never tested positive) is what brought on my MC.

Hugs,

Polly

gluten · Post by **gluten** » Fri Nov 23, 2012 11:28 am

Hi, I was bitten by a tick years ago before my dx for FSHD or MC. I was never tested because I did not get the circle or rash. While researching Lyme disease I found why and how it started in Conn. It can be transmitted by all ticks not just the deer ticks and in different parts of the country they give it a another title. The interesting item I found is the high incidence of people with ALS and Lyme disease. Dr. Horowitz from N.Y tested 19 ALS patients and 13 tested positive. A doctor in Florida tested 150 ALS patients and all tested positive. The problem is how to treat it. Does it develop biofilms that protect it from antibiotics? There are enyzmes that you can buy to break down the bioflims. That can be extremly dangerous because the bacterias get released and can stress out the immune system and cause bacteria related diseases. But the safest way is find a doctor that will treat it with pulse antibiotics. The doctor will give you the enzyme first to brake down the biofilms and then after an antibiotic to kill the pathogens that are released from the biofilm. Then stop the antibiotic and start the procedure over again. The problem is trying to find a doctor that has a understanding of bioflims. If they do not understand about diet and proper nutrition, good luck with trying to explain bioflims. Jon