Scleroderma and Lyme disease

Here is some info that might be good to know.


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Powerful Words

"Most of the important things in the world have been accomplished by people who have kept on trying when there seemed to be no hope at all."

- Dale Carnegie

firefoxMaybe you remember being bitten by a tick as a child and thought nothing of it, maybe you were bitten recently, very likely you don't remember a bite at all. But you aren't well and you have symptoms and possibly your doctor (or many) cannot diagnose you. Maybe you have been "diagnosed" without a "cause" with something such as anxiety, depression, MS, CFS, Fibromyalgia (to name a few) or worse, your Md thinks you are making it up and nothing is wrong with you.

Always look for the cause!

Maybe you remember having a flu like illness and have not been the same since and maybe not. It is possible you have intestinal problems and/or feelings of insanity. Maybe going through childbirth or another stressful event seems to have set your body reeling out of control. Possibly an injection or medication seems to have set something off in your body. Maybe you have localized pain, migraines or insomnia or maybe you hurt all over, you just know you need help and really the possibilities of how you might feel are endless. Maybe all of your test results have all been normal and possibly you have even had a (or many) negative Lyme test. It is likely you found this site because you don't feel well and are scared. Welcome to the world of Lyme Disease, where most of us with this disease have been down that road.

I saw many doctor's (see Author's Bio) so I want to help you get on the correct road quickly and that starts by trusting the information you read here. Many people go many months and most people go many years undiagnosed and see anywhere from 10-40 Md's.

I think most people are amazed at how small a tick can be and just how dangerous. Ticks can be the size of a the period at the end of this sentence. Not just Deer ticks transmit Lyme, all ticks can be carriers. Many of us don't even notice a bite. Many of us would ignore a small black "dot" on us. Some have described they thought they had a black head pimple when in fact it was a "feeding" tick. Others have described a freckle "with legs". Ticks can be black, brown or tan and found in your backyard, parks, forests, literally everywhere and in all 50 states and there are 300 strains worldwide. The most common place to get bitten is in your own yard. Doctor's commonly will say "Lyme doesn't exist in this area". Don't buy it.

Lyme literate doctors are learning Lyme may be transmitted sexually, through saliva, organ donations, blood transfusions and passed to your children congenitally. Fleas, mosquitoes and other blood sucking insects can also carry Lyme Disease. These insects feed on any animals, deer, mice, birds, etc., pick up bacterias, then feed on you. It is not uncommon for an entire household to test positive for Lyme, unlikely will two people have identical symptoms. There are varying degrees from functional to bedridden.

Lyme Disease, which is rarely ever talked about or discussed in the media (and when it is, the information is usually reduced to "look for a rash, flu-like symptoms,joint pain, fatigue". These can be part of Lyme but not always and there are over 100 other symptoms) has become the fastest growing infectious disease in the U.S. (believed to have surpassed AIDS) and the number one vector (insect) borne disease. Yes, you are far more likely to get Lyme Disease than West Nile Virus, at least 10 times more likely. You can be bitten and not know it and Lyme Disease can "percolate" in your body coming out one symptom at a time over years, or symptoms can appear in instant.

Having a negative Lyme test means nothing. The standard blood test your primary doctor orders has been proven to be an unreliable test. These tests were designed by the CDC (Center for Disease Control) and were NOT meant to be a diagnostic test and they are highly unreliable. The CDC themselves have this posted on their website. Lyme has always meant to be a clinical diagnosis, not to be based on an any blood test. The CDC has reported that 20,000 cases of LD were reported in 2006, but 200,000 cases of LD went unreported by doctor's and/or misdiagnosed! Lyme simply is an epidemic.

The 2-part unreliable testing process begins with the ELISA test. It is a first step screening test that is thought to miss Lyme in most cases of Lyme Disease. The second part, the Western Blot test. It will only be given if the ELISA is positive. So few move onto the WB. The Western Blot can be problematic, it is misread by doctors and it is now missing important bands since the Lyme vaccine was developed then pulled from the market. When the WB reads negative, Md's need to look at which bands are positive, even one specific band being positive can indicate exposure to Lyme. It is very complex and requires a Lyme literate Md to diagnose.

Most with Lyme Disease know the test given at hospitals and commercial labs across the country are unreliable. Most of us have been tested through Igenex, a tick borne specialty lab. (Please see ILADS basic info. - 1st link under Resources for more on the unreliable Lyme test). Igenex has many ways of finding tick borne disease and is the preferred lab of most Lyme literate Md's. But even though Igenex is a very reliable lab, no blood test is 100% reliable, therefore seeing an LLMD and telling him/her your symptoms is critical to correct diagnosis and treatment.

Lyme Disease has been called the "Great New Imitator", having up to 100 different symptoms, it is hard to recognize by Md's since most of us don't have the same exact mix of symptoms. Md's are not trained to diagnose Lyme and will not treat you unless you have recollection of a tick bite and the "classic" bulls eye rash. Even if you do have proof of a tick bite or rash, they will surely under treat you. When Lyme is under treated or a bite is never treated, symptoms can appear and/or reappear and will not abate without proper diagnosis and long term treatment. (Please see the symptoms link under Resources). Most Md's do not believe that Lyme Disease can become a chronic condition that can be from bothersome to totally disabling, lasting for years or a lifetime.

Lyme bacteria (called Borrelia burgdorferi - Bb) is similar to syphilis bacteria in appearance. It is corkscrew shaped and enters the body immediately after a tick bite and has been found in the CNS (central nervous system) within 24 hours of being bitten. Because of its shape, it prefers to quickly move into the tissue, where it travels better and can invade organs and every bodily system. It grows in cycles, usually every 4-6 weeks and that is why long term antibiotic treatment is necessary. You cannot kill this Bb in 2 weeks of antibiotics, it will grow again in a few weeks. It is a smart bacteria and can hide from the immune system invading healthy cells, going unnoticed, therefore is not attacked by our immune system. It can form cysts when it senses a hostile environment (antibiotics) and hide from many antibiotics.

Lyme is a "political" disease that has doctor's butting heads regarding treatment. The IDSA (Infectious Disease Society of America) simply will not even consider that Lyme is easy to get, needs prolonged antibiotic treatment until symptom free and that the infection is hard to kill. They do not consider the co-infections (other bacteria ticks carry) that make Lyme even more virulent. Their claims of short term antibiotics "curing" Lyme Disease is highly unlikely. They believe that if you still are symptomatic after a short course of antibiotics that you have what they call, "Post Lyme Syndrome", they will not call it Chronic Lyme Disease, nor will they treat it any further. Their theories have been proven untrue by Lyme patients themselves. Many patients have gotten well after many months and some after many years of treatment with antibiotics.

ILADS (International Lyme and Associate Disease Society) are a group of Lyme literate Md's that recognize Lyme can be a long battle . They have mountains of evidence that long term antibiotic treatment works! The IDSA seems not to consider the evidence, nor consider that there are millions sick with Lyme Disease, many misdiagnosed with MS, Fibro, Parkinsons and a multitude of other diseases.

No matter what your story, you remember the bite, you don't remember any bite, you are obviously searching for answer to your symptoms. If you have had "normal" test results or test results that don't quite fit your symptoms or if you have been diagnosed with any of the following (please remember, this is only a partial list), please consider seeing an LLMD (Lyme Literate Md) to rule in/out Lyme Disease: Juvenile Arthritis, Rheumatoid Arthritis, Reactive Arthritis, Infectious Arthritis, Osteoarthritis, Fibromyalgia, Raynaud's Syndrome, Chronic Fatigue Syndrome, Interstitial Cystitis, GERD, Acid Reflux, Fifth Disease, Multiple Sclerosis, scleroderma, Lupus, early ALS, early Alzheimer's Disease, Chron's Disease, Ménières syndrome, Reynaud's Syndrome, Sjogren's Syndrome, Irritable Bowel Syndrome, Colitis, Prostatitis, Parkinsons Disease, Psychiatric disorders (bipolar, depression, anxiety, etc.), Encephalitis,Sleep disorders, Thyroid disease and various other illnesses, including repeated infections. Any multi-symptom, multi-system issues, Lyme must be considered.

Lyme literate Md's are not easily found and are not listed in your local phone book under Lyme Md. They are far and few between and many have to travel distances once one is found. Believe me when I say, your primary doctor has never even heard the term, "Lyme Literate MD" so don't waste your time asking for a referral. To find a reputable LLMD you can visit our Resources Links, there is a Lyme doctor search link. Also, you can visit and use their "Contact" link for reputable, literate Lyme doctor's.

The most important fact I can tell you and that you must remember and be aware of is that your current primary Md (no matter how much you may trust or love him) likely doesn't know the facts surrounding this disease and is most likely totally uneducated about Lyme Disease. He/She will likely tell you Lyme is "rare", "easy to cure" or you simply don't have it, because "Lyme doesn't exist in this area". Please be aware, all can be untrue statements. Your doctor does not know the never ending symptoms of Lyme and all the ways you have likely been exposed. This includes "specialists", Neurologists, Infectious Disease MD's and Md's from all fields of medicine, remember, they know very little regarding Lyme Disease, if anything at all. Follow your gut instincts, your instincts will never fail you. If you are symptomatic, get tested through Igenex and see an LLMd, why go on wondering?

I wanted so much to believe a mainstream Md could diagnose me, I put off seeing a Lyme doctor for a long time, precious time that the infection grew. After seeing 12 doctors and having to research my symptoms online, I realized I likely had Lyme Disease and sad but true, none of the Md's I was seeing would ever be able to diagnose me and they never did.

Many of the answer's you will need regarding Lyme Disease and the co-infections can be found at this website. Our Resource link (I urge you to view each link) will direct you to the best and most accurate information available online. Our FAQ (frequently asked question's) link answer's basic question's regarding Lyme Disease. Read our Stories link, Lyme patient stories written in their own words, maybe you will "identify" with one of these stories. My story can be read under Author's Bio. Also many articles and videos are available under the Archived Forum/Articles link - click on "Everything you need to know about Tick Borne Diseases".

Thank you for visiting Truth About Lyme Disease, I hope you will find the answers here that will get you on the right path, into treatment and on with healthy living. (This site is dedicated to all those suffering from Lyme Disease, true warriors who never give up. May you be blessed with renewed health).

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I had Lyme Disease, and it was a case diagnosed while it was acute.

I was treated at the time with 3 weeks of oral antibiotics. After that all my problems started, but we didn't associate them with Lyme, because earlier I had had a bad car accident and pain and other issues were linked to that.....then they told me I was a 'head case'. I was a 'head case' until I had a lip biopsy done and it showed Sjogren's. Then they told me it was still not SjS. Then years later, I seroconverted to a very high ANA with speckled nucleolar pattern.

My neuro and rheum admit that Lyme can cause many issues. I did get treatment two more times, for 6 months. It did not help much, likely because, even if the 'germs' are dead, Lyme sets up molecular mimicry. Borrelia Burgdorferi can change its outer protein coat or cell wall and can resemble your own they joint linings to nerve tissue. In the attempt to rid the body of the germ, the body can get somewhat confused and start to attack cells that are similar to BB, hence the molecular mimicry. Next thing you know, you have an autoimmune disease. This even happened with the Lyme vaccine. Certain people with a specific HLA type, developed terribly autoimmune disease from the Lyme vaccine. It was pulled from the market.

I have very mixed feelings about long term antibiotic treatment because antibiotics are not selective in terms of what is killed. We need organisms to make our bodies work correctly. If you kill off the good organisms in your intestines you can get Clostridium Difficile in you intestine and that can kill you. It is very hard to treat and you suffer from horrible diarrhea and pain during it. We have natural flora all over our body.

I am on IVIG since I won't immunosuppress myself at this point. I am concerned that my immune system is a mess.

The docs don't know which autoimmune disease I really have, my ENA is negative, despite a very, very, persistently high ANA. I have very bad sensory and autonomic neuropathy. No system in my body is unaffected. I wish the answer for me was as simple as taking antibiotics. It isn't.

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Have you read ?

You are right about antibiotics not being selective in what they kill and that is why you have to take probiotics without fail.Strange that doctors never tell that to all the teenagers with acne that take them for years on end.

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Yes, I also tested + for antibodies to Erlichiosis. I do not think I have any active infectious disease. I do believe that I somehow got an autoimmune disease. Both parents had autoimmune issues.

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Thanks Christine!

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I hope that everyone that participates on this forum will seriously look into the potential that Lyme and the common coinfections may have triggered scleroderma. There is emerging data showing a significant connection between Lyme and scleroderma. This information may not be published for years, which could be too late for many of you. Rheumatologists by and large do not "beleive in" chronic lyme. If you want to check this out, go to a Lyme Literate MD who will give you the proper tests and may even diagnose based on clinical symptoms. Lyme is known as the Second Great Imitator and can imitate many deadly diseases, including MS, ALS, Alzheimers, RA, Bi-polar, and more. If you treat a chronic infection with the standard immune suppressive therapies you will be doing harm. Like was said above, FIND THE CAUSE.

Cheryl F.

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