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Uploaded: Thursday, May 3, 2012, 4:03 PM                                             Updated: Friday, May 4, 2012, 9:18 AM

When Lyme disease becomes a nightmare Locals tell of years of elusive diagnoses and painful symptoms

By Kate Daly Special to the Almanac Sherry Cagan of Portola Valley says she nearly died when she ended up in the emergency room with the systemic MRSA staph infection last year. after seeing “maybe 50 doctors” for a long list of symptoms that included hip pain, arm pain, numbness in the foot, fatigue, sleeplessness, brain fog, and decreased lung capacity, she finally received a diagnosis that had eluded her for seven years: Lyme disease. Kathleen O’Rourke of Woodside has her own story of living with Lyme disease for seven years. her symptoms have ranged from vertigo to dizziness, irritability, blurry vision, apnea, heart palpitations, joint pain, neuropathy in her feet, and tinnitus. Their friend, Bonnie Crater, doesn’t have Lyme, but says she grew alarmed when yet another mother in their circle, Laure Kastanis of Portola Valley, “was pretty sick” with the disease. Last fall Ms. Crater and a mutual friend, Gayle Collat, started meeting monthly with the three Lyme patients “to try to understand the disease better.” They have gone on to found the Bay Area Lyme Fund (BayAreaLyme.org) to help finance research and innovative therapies. They either serve on or advise the board along with Ms. Cagan’s husband, Laird, Wendy Adams, Stephen Marra and Kate Misskelley. Their new office is at 888 Portola Road, Suite A7, in Portola Valley. This is the time of year when the risk of getting infected is higher because ticks are more active when it’s cool and damp. Dr. Raphael Stricker, a Lyme expert in San Francisco who says he treats 2,000 patients from all over the Bay Area and beyond, predicts “it’s going to be a bad year” here due to the late rain. Dr. Stricker’s patients come from as far away as Australia and Europe. he says he thinks the number of Lyme cases is steadily increasing worldwide because animals are spreading the disease where it wasn’t before, and people are encroaching upon the animals’ territory. Lyme is caused by the bacteria Borrelia burgdorferi, which in California is transmitted by infected Western black-legged ticks that feed on gray squirrels, mice, dusky-footed woodrats, birds, lizards, deer, and sometimes humans. In many cases, tick bites can go undetected, because in the nymph state, ticks are as small as a poppy seed and hard to see. One telltale sign of Lyme is a bull’s-eye rash developing soon after a bite, but that only happens maybe 30 percent of the time, Dr. Stricker says. another early sign is flu-like symptoms. if caught within weeks of infection, the disease can be treated with antibiotics. a delay in treatment could lead to a more complicated form of chronic Lyme and even death, he says. according to the San Mateo County Health System, 3 to 5 percent of black-legged tick nymphs and adults test positive for the bacteria in the county, yet no cases have been reported of humans’ contracting Lyme in the county in 2010, 2011, or in 2012 to date. Dr. Stricker says San Mateo County is “typical of most counties in the state” where the numbers reflect an “under representation.” he estimates nine out of 10 cases of Lyme don’t meet the criteria set by the Centers for Disease Control and Prevention, and are therefore “thrown out” rather than reported. the CDC tracks Lyme in all 50 states and reported 126 confirmed cases and three probable cases in California in 2011. CDC’s website describes Lyme as “the most commonly reported vector-borne illness in the United States.” Ms. Cagan said she thinks thousands of people may be suffering from Lyme in the Bay Area. Many may be like her and not know whether they have Lyme because the disease can take months to manifest and tends to mimic other illnesses such as Bells palsy, chronic fatigue syndrome and fibromyalgia. Diagnosis can be tricky due to the nature of the disease. the bacteria enter the blood and burrow into tissue, attacking different parts of the body at different times, undermining the immune system, and inviting other opportunistic health issues to arise. there are several Lyme tests available, but none is considered 100 percent reliable, Dr. Stricker says. In Ms. Cagan’s case, she remembers working outside on the family’s property back in 2005 and a day or so later, finding a tiny tick embedded in her neck. Weeks later she landed in bed for 10 days with severe flu-like symptoms. she then developed pains and other problems that led her to consult dozens of doctors. “Before I was diagnosed with Lyme, I was told I had everything from MS to cancer,” and that she needed surgery, she says. Initially, she took oral antibiotics. after a relapse, she ended up on an IV. Since October she has been hooked up to it for five to six hours a day. she just recently started feeling better, she says, but still relies heavily on her husband to help care for their children. she calls him her “rock.” Now in her 50s, Ms. Cagan wants to put this “personal nightmare and family nightmare” behind her. “I pray to get my life back.” In Ms. O’Rourke’s case, she doesn’t recall being bitten by a tick in 2005, but remembers doing a lot of gardening at their home in the Woodside Glens, where the front yard was “a regular thoroughfare of deer.” she was in her 30s, yet felt sick, tired, achy, irritable, and tingly, “like my skin was going to explode.” she tested positive for Lyme as well as two other tick-borne diseases, babesiosis and ehrlichiosis. after three years of treatment she says, “things are so much better than they were.” her son, Louis Sheridan, developed his own symptoms at age 9, soon after the family moved near Skyline Boulevard several years ago. “He had a tick on his tummy that the dog brought in,” Ms. O’Rourke says. he was complaining that his feet felt like lead bricks. Doctors checked him for apnea and adenoid problems, and eventually diagnosed him with Lyme. after one and a half years of taking antibiotics, “he is completely great,” she says. after the family’s move, his little sister, Hannah, complained of ocular migraines, and she missed six weeks of school. she has shown sensitivity to black mold, but tested negative for Lyme. Based on her family and friends’ experiences, Ms. O’Rourke is concerned about the prevalence of Lyme in the area. “I worry about all the gardeners and stable hands who have no idea they’re coming in contact with it.” Steve Gray lives down the hill in Woodside, but traces his Lyme infection to Half Moon Bay. seven years ago his dogs came back from a walk there and must have picked up some “hitchhikers” because several days later he found a tick hiding in his belly button. two days later he was hospitalized with anaphylactic shock for a suspected food allergy that hasn’t troubled him since. Months went by and he started feeling tired and developed a limp. he had three blood tests done, but it wasn’t until IGeneX inc., a medical laboratory in Palo Alto, tested him that he was diagnosed with Lyme in 2008. he also tested positive for the co-infection, babesiois. “I’ve been feeling like I have MS, ALS, muscle spasms, and jerks,” mr. Gray says. he has turned to several infectious disease specialists including Dr. Steven Harris in Redwood City, who, he says, favors antibiotics and alternative approaches such as dietary changes. In his 60s, mr. Gray keeps physically fit, drinks quinine and filtered water, and now follows a diet free of gluten, sugar, dairy and red meat. despite all the clean living, he says, his health care costs have gone up to over $800 a month since his diagnosis. Funding research the Bay Area Lyme Fund is hoping to provide people like mr. Gray with help down the line. the group is funding research at Stanford to design a transdermal patch that could potentially kill off the bacteria. another resource for Lyme patients is the Mid Peninsula Lyme Disease Support Group. Facilitator Scott Forsgren says 15 to 20 people usually attend on the second Tuesday of every month from 6:30 to 8:30 p.m. in Room E at El Camino Hospital in Mountain View. Ms. Cagan went to one meeting and says after seeing people shaking in wheel chairs, and hearing stories about losing homes to pay for treatments, “I got in my car and I bawled.” she says some drugs can cost $10,000 a month, and aren’t approved by insurance companies because the generally accepted protocol for treating Lyme is a short course of antibiotics. her personal saga makes her determined to help spread the word about Lyme prevention. Lymedisease.org encourages people to avoid going where ticks like to hang out, in leaf-littered places, tall grasses, stumps and trunks. to prevent tick bites, the advice is to wear light-colored long sleeved shirts and pants that are tucked in and treated with pesticides. As an alternative, Theresa Brown of Woodside swears by the lightweight finely meshed insect protection clothing she bought online: a hooded sweatshirt and pants made by Bug Out. Frequent body checks are suggested in tick country. if a tick is attached the best way to remove it is to pull straight back with tweezers. Disinfect the bite area, and keep the tick in a moist plastic bag to send to a tick-testing lab as soon as possible. the county offers that service. MORE INFORMATION ■ the Bay Area Lyme Fund is funding a Stanford study of ticks found in Woodside and Portola Valley. Volunteers are needed to collect ticks on May 5 so they can be tested for infections. to sign up contact or call (650) 530-2439. ■ the group is sponsoring a fundraiser featuring polo, kids’ games and pony rides at a luncheon and auction on May 27 at Menlo Circus Club in Atherton.

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Comments

Posted by Judy Morley, a resident of the Menlo Park: Central Menlo Park neighborhood, on May 5, 2012 at 2:45 pm

Thanks for good reporting on Lyme disease. I was successfully treated for 3 years. This is the most accurate and comprehensive news article I’ve seen. Appreciate the good research.

Posted by resident, a resident of another community, on May 7, 2012 at 11:08 am

There are a lot more Lyme patients in the Bay Area than you would think from coverage, mostly because of doctors believing it’s an East Coast problem and not thinking it exists here. When people don’t get early diagnosis and fast treatment, it becomes a more serious problem. Controversies over late-stage treatment, enmeshed with various conflicts of interest, mean most patients keep their heads down and just get the treatment they need if they can. I’m surprised to see such a comprehensive report in a local paper. I have read that ticks in Santa Cruz county are infected at a higher rate, and some of the coinfections occur at an even higher rate than Lyme.

An award winning film about the disease was produced by a Palo Alto resident and was on the Oscar documentary short list last year.

Posted by Mari a., a resident of the Menlo Park: fair Oaks neighborhood, on May 11, 2012 at 10:11 pm

The article states: “There are several Lyme tests available, but none is considered 100 percent reliable.” I slept out in the open in the big Basin area about 6 years ago at Cutter Camp with the cub scouts and remember feeling a lick on my belly and scratching it off in the middle of the night. I then developed the telltale Lyme disease bull’s eye rash and went to get tested. the test had conflicting results so they could not tell weather I had Lyme disease. my doctor and i decided to treat it like Lyme disease and i took a series of strong antibiotics that made the skin on the backs of my hands very sensitive to sun. it was summer and i am outdoors much of the time. Although it was an uncomfortable experience i am very glad I took the antibiotic treatment. my philosophy with Lyme disease is: when it doubt go ahead and treat it!

Friday November 11, 2011

Approximately three years ago I spent a frustrating and intermittently physically debilitated five months before being successfully diagnosed and treated for borreliosis infection, also referred to as Lyme Disease (LD). I recently went through mitral valve repair surgery. the possibility exists that the severe prolapse developed during the infection (if indeed it has been eradicated).

Every organ and organ system can be affected by untreated LD. I was relatively fortunate. some patients are not treated until symptoms have progressed beyond repair. When the disease progresses enough chronic symptoms often persist, even when treating with aggressive antibiotic mixes, numerous complimentary and alternative therapies and a nutritional regimen targeted to repair damage caused by the disease and boost the immune system. Early treatment and diagnosis are critical. it recently took 12 to 14 months before a positive serological (blood) test for LD is now initiating a monitored antibiotic treatment schedule for my mother Karen.

Given my history with LD, various Board of Health membership dinner lectures by state health officials, and personal research I thought that I was a fairly educated nonprofessional resource and advocate for care. Early on and during Karen’s journey toward diagnosis and treatment for fatigue, depressive symptoms, intermittent yet persistent weakness, loss of appetite and a host of other clinical and non-specific symptoms, my requests for monitored LD antibiotic treatment, a very good LD diagnostic indicator, met with the same response — another test was ordered. When it came back negative (there were four or five negative results before a specialized test from Pharmasan Labs confirmed a positive infection for a $600 fee) psychopharmapsyeudicals were experimented with and tested for the “right mix.” Intentions were good, but reliance on blood tests to diagnose LD is unreliable. these tests are often incorrectly negative.

I take responsibility for having known this and not requesting treatment in writing, despite negative results, and then finding a LLMD (Lyme Literate M.D.) who would have expedited and monitored such a request. Absent a bulls-eye EM rash (often accompanied with fever) LD is diagnosed based on clinical symptoms, history and a response to treatment. no test can definitively rule out LD, though accurate and knowledgeable interpretation of lab results is important to this diagnostic and treatment exercise. Over reliance upon a positive lab test result is cause to search out another more literate practitioner.

It is your health care clock, dollar and choice — and it may be ticking toward continued disease if you do not practice the well established consumer rule: caveat emptor (buyer beware).

DEAN FULCO

Richmond

The writer is a member of the town’s board of health.

(Swat!) Summer has arrived full force with her (smack!) predators in the air and on the ground. unfortunately, for legions of mosquitoes and ticks, we are the prey. but beyond the annoyance of these pests lurks a medical risk of disease. Insects carry numerous mild to life-threatening infectious agents ranging from Lyme disease, Rocky Mountain Spotted Fever and Ehrlichia to West Nile Virus, viral encephalitis, and Dengue, our newest summer contender. And don’t get me started on the bacteria in the potato salad.

But don’t panic. Awareness of infectious risks and how to minimize them can avoid abdominal cramps without cramping your summer fun.

Tick-borne illness: You can contract Rocky Mountain Spotted Fever, Ehrlichia and Lyme disease (which is rare in Georgia) from ticks. Each of these diseases causes headache, back and muscle aches, fevers, and Erlichia also sparks a rash. these symptoms begin within 4 to 21 days after tick exposure. unfortunately infection may occur without you knowing you even had a tick.

Exposure is best prevented by wearing light-colored clothing which makes ticks more visible, along with long pants and long sleeves when walking in tall grass or brush. Tucking your pant legs inside your socks also prevents the tick from accessing your skin and climbing to hidden

areas. Insect repellant with DEET on clothing and Picaridin on the skin is effective if you reapply it every few hours.

Mosquito-borne illness: Several types of viral meningitis are carried by mosquitoes in Georgia. these include West Nile Virus, Saint Louis Encephalitis, fortunately rare Eastern Equine Encephalitis, and a variety of unnamed arboviruses. Their symptoms are headache, stiff neck, fever and slight to severe confusion. Dengue is a new serious viral agent identified last year in Key West with 28 cases as of June, 2010. Previously this virus was only seen in travelers. This illness can vary from mild to severe with rash, fever and headache, up to life threatening hemorrhagic fever.

There are no effective treatments for any of these illnesses. Prevention is your only protection: since mosquitoes avoid direct sunlight, staying in direct sunlight during the day will help. In the shade and as the sun sets, it’s wise to either cover up or apply insect repellants containing Picaridin to the skin, and DEET to collars and cuffs.

Food-borne illness: Summer cookouts are always fun, but foods that are left out of a cooler can quickly become contaminated with Staphylococcus, Campylobacter, E. Coli, all causes of diarrhea, vomiting or both. Beware of food that has been out of the refrigerator for more than two hours. if many hands have already visited the dish during the picnic, be especially cautious. these uncooled foods could make for a very uncool after-party.

Remember that taking a few precautions can reduce your risk for illness so you can enjoy the season.

mayoclinic.com/health/lyme-di…

That should help.

The symptoms include a bulls-eye rash and flu like symptoms. these may appear days to months after the tick bite. if left untreated, joint pain (arthritis) will follow and possibly neurological symptoms.
If caught in early stage its easily treated with Doxycyline.

Good sources of info about Lyme disease:
lymedisease.org
canlyme.com
lymenet.org
lymeinfo.net
lymediseaseassociation.org
ilads.org
betterhealthguy.com

from one another when being diagnosed?

All of these diseases are very complicated to diagnose because they have simliar symptoms. there are no easy tests that give a yes or no answer. Lab tests, medical history and symptoms AND ruling out other disorders AND having an experienced clinician can lead to a diagnosis.

Basically, there is no simple answer.

Fibromyalgia is a muscle disorder that is not as serious as the last two, and lupus is a connective tissue disorder. Lyme disease is an infection and in that sense is unrelated to the first two. however, if not treated, in its third stage Lyme disease can go on to affect joints.

Fibromyalgia is stiffness and pain felt in fibrous tissues, usually deep within the muscles. it seems to be accompanied by emotional tension reflected in the knotting up of muscles. there is nothing basically wrong with the muscles themselves. Yet localized pain is likely, and there may be even slight swelling within the affected muscles. it often causes a backache.

In lupus, connective tissue in any part of the body may become inflamed, damaging the skin, joints, and internal organs. the immune system forms antibodies against cell nuclei, DNA and RNA, cell proteins, phospholipids, red and white blood cells, and other structures. these antibodies become jointed to their targets as immune complexes that provoke the inflammation.
Because the disorder affects so many body systems, general symptoms are common, including fatigue, a sense of ill health, loss of appetite, loss of weight, and fever.
The skin is affected in 80% of cases, usually with a butterfly-shaped rash over the cheeks and the bridge ofthe nose. a more general rash often affects those areas of the skin exposed to sunlight. Partial or complete hair loss may occur. Skin ulcers and skin nodules may form.
Around 95% of people with lupus have some problems with their joints and muscles, with pain more common than deformity. about 85% have anemia or another blood disorder, including either ineffective blood clotting or unwanted clotting in the veins or arteries causing an embolism, stroke, or other problems.
Virtually every body system may be affected – from the eyes to the intestines. Lupus affects mostly women. Because of the blood-clotting abnormalities, miscarriages are common in pregnant women with lupus. the disease often flares up in the early months of pregnancy. nevertheless, many women with the disease have successful pregnancies and give birth to healthy infants.

Lyme disease is a bacterial infection. it is caused by the spirochete bacteria Borrelia burgdorferi, which is transmitted to humans from a bite by an infected tick. usually a red spot develops on the skin that gradually increases in size. the center of the spot returns to its normal color after a day or two, so the skin has the appearance of a bull's-eye. This spot on the skin is very noticeable but may not be painful. in some cases the skin clears up and there are no other symptoms. however, in other cases within a day or two more red spots appear and a headache, fever, swollen lymph glands, and pain in the joints and muscles appear, as well as a feeling of illness and weakness. If Lyme disease is not recognized or treated, the second stage of the illness affects the heart and nervous system. Meningitis and partial paralysis of the muscles served by the facial and other nerves often occur. the meningitis causes severe headache, muscular weakness, and numbness or tingling. Irregular heartbeat and inflammation of the heart and pericardium are common. those who remain untreated move to the third stage of Lyme disease, in which chronic arthritis often develops, usually affecting the larger joints such as the knees.

Unfortunately they all share many and very similar symptoms,i was diagnosed with fibromyalgia,lyme disease,it ended up actually that my body was not getting proper oxygen from lung disease from chemical damage,but because symptoms were so alike ,I was mis -diagnosed.
lupus,is where the body's immune system,turns on itself ,and attacks the body,harming instead of helping. some foreign objects like breast implants,cause immune system to recognise it as a foreign substance,it tries to get rid of it,can;t,so it goes haywire,and attacks itself!
fibromyalgia is a secondary diagnosis or skin,flesh pain,when in actuality its real cause is rarely diagnosed,my fibromyalgia is due to lack of oxygen and damage to blood vessels.
highly diagnosed in people that are stressed,depressed,smoke,and have poor life-style behaviours!

Lyme disease treatment is pretty standard. As long as you are not too far progressed, Lyme disease treatment is pretty easy. once you’re in the final stages of the disease it is a bit more difficult. Don’t be like that tons of others who think lyme disease has many treatments for the disease itself when in fact there are only a few, but many for the symptoms. no two people will have the same experience with the disease. You need to know these things if you have Lyme Disease. Also, diet is vital if you want to stay healthy — I drink Shakeology each day to supplement my diet. I love it, check out these Shakeology reviews.

Noticing the symptoms of Lyme Disease early will help you deal with the symptoms sooner. You may need to see your doctor any time you are bitten by a tick for antibiotic treatment. Those with heart, lung or kidney problems need to be especially mindful of this.

It doesn’t mean you can’t begin treatment while the doctor is checking out the tick. even if your tick is positive you will already be well on your way to healing and should be perfectly fine. if it isn’t then you have helped to boost your immune system against whatever else the tick might have been carrying. It’s a win win situation.

There are alternative medications out there but you’ll want to consult your doctor first. some alternative medications have been said to be better for you than other prescription medications. The problem is that not all of these alternative treatments are monitored by the FDA or any medical association. Your doctor can give you some great tips on alternatives that really do work. To keep from making your condition worse or exacerbating the symptoms you will want to ask your doctor for advice on what will work for you.

It is especially important to talk with your doctor if you feel you may have Lyme disease and are pregnant. The fetus may contract Lyme disease from the mother while inter. it should still be fairly easy to treat this disease if caught early. Of course, it is never easy to treat a disease when you are pregnant. All Lyme disease treatments have the potential to affect your baby. You can help ensure your baby’s health and safety by working closely with your doctor while being treated for this disease. When it comes to treating Lyme disease, there are not a whole lot of selections. The cure for the disease is only found in medication that you will get from your doctor or at a hospital. although, this doesn’t necessarily mean that you have no choice when it comes to making the symptoms of the affliction any easier to put up with. it can take a while to completely recover from the disease. be sure to consult with your physician about options for keeping the symptoms from becoming too much for you to deal with. Lastly, remember to read this post titled “is Shakeology worth it“.

When you’ve ever gotten Lyme disease from an infected tick chunk, then you know how uncomfortable the illness can be. some individuals don’t realize simply how irritating and painful the illness might be for those suffering from it. Joint and muscle ache that lasts for days or perhaps weeks at a time, numerous trips to the physician’s office, misdiagnoses and failed therapies all can make for a particularly aggravating interval of time.

Dealing with Lyme disease could be particularly difficult as a result of oftentimes the illness is misdiagnosed, which ends up in treatment plans that don’t work and ongoing illness and pain from the disease. As a result of there is no conclusive test to determine whether or not a Lyme illness infection is current, misdiagnosis is common. This may be especially frustrating for those who are informed that their symptoms are “all of their head” or that the signs are purely psychiatric and that they need anti-depressants. There are more than 100 completely different symptoms of Lyme illness, which can make it extremely tough for doctors to narrow down the symptoms into one illness. the illness can also be commonly misdiagnosed as another sort of ailment, akin to arthritis, and so the affected person does not obtain correct treatment.

If you’re coping with Lyme disease in your life, following are some ideas that will aid you as you fight the disease:

Understand Lyme illness – Get familiar with the disease. Educate yourself on the fundamentals of Lyme disease, such as its causes, signs, how it is recognized and prognosis. Lyme illness develops from the micro organism Borrelia, which is mostly transmitted by way of the bite of a deer tick. once the micro organism invade your body, you’ll most probably start to expertise signs within a matter of weeks. Signs include a reddish bulls-eye shaped rash, fever, fatigue, and arthritis-like muscle and joint pain. Dealing with Lyme disease and its signs actually just isn’t enjoyable, however by examining your symptoms and medical historical past, your doctor will hopefully be able to make a correct diagnosis. once a diagnosis is made, remedy can begin. This can most frequently embrace either oral or IV antibiotics to rid your physique of the bacteria. Understanding the illness and the way it impacts your physique is a crucial part of dealing with Lyme disease.

Explore your treatment choices – Talk to your doctor about completely different treatment which may be available. Antibiotics are most commonly used to battle the disease. Nevertheless, there are alternative therapies available, though they have not been studied thoroughly during clinical trials and due to this fact might not be as effective.

Be affected person – that is the hardest thing to do if you’re feeling terrible, however it’s essential when dealing with Lyme disease. you want to give your physique time to heal and reply to therapies, and worrying or stressing over how long it’s taking or dwelling on how dangerous you are feeling will NOT assist you to get better any faster. in actual fact, it’s more prone to decelerate your recovery. So just hang in there — you’re going to get higher in time.

If you need additional info about symptoms of Lyme disease, swing by Aaron Hofleenger’s internet site directly.

Share and Enjoy:

I was diagnosed with Lyme in July and after 21 days of doxycycline I felt better but continue to have some days where I am tired and feel like I want to take a nap. overall,I am not debilitated by any means but I just don't feel the same as I did before being diagnosed. Yesterday I received a Tetanus shot and today I feel a little icky…..kinda tired…no fever or full blown Lyme symptoms but I am wondering if the shot may not have been such a good idea???

Continue to treat lyme

21 days is not enough time. trust me i have had lyme for 6 years and i am on tons of groups with thousands of sick lymies

please treat more. doxy wont be enough this late in the game IMO

lymediseaseanswers.com/site-m…

Posted on 06. Mar, 2011 by admin in Treatments

Question of the Year: Are neurological (MS-like) symptoms caused by lyme and co-infections, or something else? is there really such a thing as MS (Multiple Sclerosis), or is MS simply a convenient way to categorize a class of symptoms, similar to Fibromyalgia?

Even my Lyme Doc (LLMD) is getting on the MS-drug bandwagon these days. why deny yourself the benefit of meds that aren’t necessarily immune suppressants, he says? he wants me to treat lyme and MS at the same time.

The only drug I would consider within the MS library of medications is Copaxone. this drug has a relatively long history of use, is reportedly immune modulating rather than immune suppressing (other common MS drugs suppress the immune system), is made up of synthetic amino acid-like components, and there are no documented reports that it escalates existing infections.

HOWEVER, and this is a BIG however, there are no clinical trials proving that it doesn’t worsen existing infections like lyme, just a comment on the manufacturer’s website that they don’t think that it does. AND, my symptoms don’t quite fit those the typical MS patient, nor do my lab tests. Yep, some of the tests definitely say POSITIVE for MS, but then the symptom patterns and other tests don’t point to the regular garden-variety MS, but rather some beast of unknown origin that eats spinal cords for lunch.

So, do I take the plunge and become yet another human guinea pig (and pin cushion) for this stuff, regardless of the risks?

Copaxone is designed to help control symptoms, not as a cure for anything. So, it could be a lifetime of daily injections into the 7 so-called fatty areas of my body in hopes of simply slowing down the progression of symptoms… not that I even have much fat anymore, after losing so much weight over the last year.

Lots of questions to ask the MS-doc this week, and I’m sure most will not bring solid answers. after all, the MS-docs are fully bought-in to the daily injections of immune modulators and/or suppressants, it’s part of their standard protocol. And, of course, they don’t recognize lyme as an entity other than ordering the obligatory tests as part of the screening of a new patient. They have no clue as to what to do if a patient actually tests POSITIVE for lyme, or for any other active infection either, for that matter.

Lots of things can create MS-like symptoms, including lyme, XMRV and HTLV-1, to name a few. Not that any of these have solid treatment protocols either though, so all of this is just another crap-shoot.

<…sigh…>

No good answers here, only questions… Hoping I’m not going down the path of falling for the latest Snake Oil cure.

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I was hospitalized with menengitis and had to be tested for HIV and Lupus. both results came back negative, but found out since that I have Lyme Disease.

No, the symptoms are really different.

But HIV and Lupus are pretty standard tests when someone has meningitis. They're the worst case causes, so they like to get those ruled out quickly.

lyme disease is from ticks unless the ticks have hiv.

Here is a very good resource for people who have Lyme:

anapsid.org/lyme/index.html

Check out the links in the DIAGNOSIS section.

First, the onset of Lyme disease is quite rapid after the bite of the infected mite. Whereas AIDS is a very slow progressing unnoticable disease at first onset.

The sores which first appear an an AIDS infected person will have great problems in healing. while those of the Lyme infection will heal quite rapidly.

The Lyme infected person feel very badly quite rapidly as if a viral attack has indeed occured. Similar in Rapidness to that of an onset of a cold. Whereas the Aids person will hardly notice the disease progressing at first onset.

Of course, in the end, treated Lumpus symptoms will disappear very rapidly, whereas the AIDS person must be on a cocktail of drugs to even keep the disease in check.