can it be lyme

[maylise]

Lot's of symptoms
Balance out of order.....having to hang on to walls. Eyes so sensitive to outside light and they hurt at times.
Anxiety and depression. arthritis pain and many more
Majalisa

[mojogal]

Hi, all of those symptoms do sound like Lyme but could be other things. Could you give us more background? Do you remember a tick bite?

[maylise]

Hi
No I don't remember a tick bite but I did find a lot of ticks in my bedroom that the dog had brought in.Found a tick on a blouse that I wore the day before. Full of blood.My symptoms started withbecomming hyperthyroid although I am hypo normally. Very high blood pressure that had me going to ER,I was on medication for high bloodpressure and it never gotten this high before. Extreme nausea and anxiety were the first symptoms that I recall. Then the lightsensitivity and balance disorder. About 3 weeks later  i found a rash on my upper legs together with a very blue large mark.i'm in Australia were they say lyme doesn't exist. So scared...Maylise

[mkh9]

You have a lot of symptoms of Lupus as well. Are you male or female? It is less likely to get lupus in men but not impossible. Do you have a fever? You may want to get a variety of lab tests since you had ticks in the room plus you have symptoms which could point to Lyme but also other things. You can start with a lyme literate doctor who knows which tests are good for testing you for lymes disease. They call them LLMD's for short on here. I'm sure one of the Lyme patients would be happy to direct you to a site for that information but you would find one in your area. Hopefully, they can put you on precautionary antibiotics just in case but this should be done after they do the lab test or you will get a false negative. For lupus they do a skin biopsy of the rash and do lab work for Antinuclear antibodies, anti DNA antibodies, rheumatoid arthritic (RA),  a complete blood count (CBC) and so forth. These could be done at a rhematologist or really your family practice doctor. If these all come out negative you could see a neurologist. I hope this helps.

[cave76]

You might try calling the office of Dr. Peter Mayne and see if they can give you the name(s) of other Lyme specialists in Australia. Australia is  huge continent and I know that traveling might be a problem for some people.

If the receptionist can't help you---- then ask to be put in touch with him.

I'm not recommending him exactly (I don't know that much about him) but his web site, although a bit confusing, has promise

http://www.drmayne.com/Lyme.htm

[mojogal]

The only problem with Lupus is I was misdiagnosed with lupus and MS and other illnesses and it was Lyme all along.

Lyme disease does exist in Australia. You may want to google Lyme doctors in Austalia. Call the doc cave76 suggested and maybe he knows of other LLMD in the country.

Long term antibiotics are necessary if it is Lyme. The symptoms you described before are all symptoms I have had or still I have. The sooner you get treatment the better.

Let us know if you have other questions. It is scary but treatable.

[mkh9]

I agree with the above and also with Lupus it can be false negative on the blood tests as well that is why they do the skin biopsy. The skin biopsy should rule out both Lyme and whether you have lupus or not as well. I don't know if mojogal had a biopsy or just antibody tests. That information would be good to know.
mkh9

[mkh9]

Oh, also they can sometimes find LE cells on the complete blood count or CBC. These wouldn't be seen on a Lyme persons blood test but there are not always present on a Lupus patient either and I think only in systemic Lupus.
mkh9

[mojogal]

I only had the blood test when they diagnosed me with lupus.
It was done by a rheumatologist.

My GP at the time, biopsied what I now know was a Bartonella lesion on my foot. It came back as vasculitis.

That is good to know about the skin biopsy to rule out or in lupus. Thanks for the info mkh9.

[mkh9]

You are welcome. I hope this helps some people. Also, usually with lupus you should have both the symptoms including a butterfly rash on the face and positive lab tests as I mentioned above including the biopsy and/or LE cell test.
regards,
mkh9

[mkh9]

See the conversation above. It is quite suspicious that the dogs had ticks and you were in the room with ticks. To really develop Lymes a tick has to be on you for  36- 72 hours. This allows time for the tick to transfer the bacteria (Borrelia burgdorferi) to you. But a lot of people don't know they have even been bitten. A target rash can form in some people, which is diagnosic) but a lot of people don't develop it too. This makes the quick diagnosis difficult. So it is best to see the LLMD first and try to rule it out. Then if you find it is negative then you can try the other tests such as seeing a rheumatologist or neurologist.
mkh9

[cave76]

Am I starting to see a gap in the 'average' tests done for diseases and the efficiency of them?

For instance----- I've realized for a long time that the Western Blots done for Lyme can flip flop back and forth on any given day: pos. one day neg. the next: IgG pos one day, IgG pos. the next day.

To try to fill a hole in my knowledge about lupus, it seems that the same variabilities can be found in the tests done for it.
When I first found a good llmd I was given all sorts of tests to rule out anything else. Lupus, of course, was one. I was positive!
Fortunately my llmd retested and next time---- neg. (I did get retested at various times through the years for ANA and they remained neg.)

So I just went to the Lupus Foundations web site and, assuming that it would have the latest info.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

excerpt:
"First and foremost, lupus cannot be diagnosed solely on lab work.

Secondly, positive lab tests for lupus can come and go over time and that is quite common. When they come and go it is less likely that the person will end up with a diagnosis of systemic lupus although that is still possible."

What we can only guess at---- mojo said she was dx'd for lupus by a rheum. ----- Do you know, mojo, if he would have continued to test with other tests ending up with a biopsy for positive indentification? Or I wonder if he would have started treating based on the 'evidence' of that one blood test.

[mkh9]

Well, there is always a "gap" in medicine cave76. The doctors take in your symptoms, you test lab tests and sometimes you get a diagnosis and sometimes you don't.  There are lots of reasons for this. There are bad and good doctors, same goes for labs tests. There is bad and good collection of specimens. Some patients don't produce antibodies, or the antibodies aren't formed just yet. The body is complicated too. Then, if a person is taking an antibiotic and is told to collect a culture and the doctor doesn't say to take it before taking the antibiotics, or the patient didn't tell the doctor. etc. Yes, there are things also missed like doing a biopsy on a skin rash for lupus. Do all doctors know about it or only those that graduated from UCLA or Harvard? Did the doctor make a mistake? How well did the nurse or doctor take the swab sample or whatever. I mean it can go on forever. It is up to each of us to take charge of our own health and be informed as much as possible. How many times have you caught mistakes I know I have. You mentioned the Lupus Foundation, well a biopsy is a lab test. As a microbiologist I worked in the department of pathology and the when there was an odd parasite for example that you want to have someone look at besides your supervisor you can walk over to the pathologist and ask them. We work together. I do know mojo and no she didn't have a biopsy. My best friend has discoid and systemic lupus. She went blind because the super star doctor didn't monitor her eyes as often as he should have when she was taking the most common Lupus drug . So now she takes no drugs and is feeling great. She stays out of the sun and wears a hat and long sleeves and she is in remission from both.After many years of the doctor giving her all kinds of research drugs so she could stay off steroids (except for her facial steroid), now she is off of that too.  I think the Lupus foundation statement about "coming and going all the time" is that they go in and out of remission which is true. My friend had discoid lupus for about 40 years and just got systemic about a couple of years ago . Does that answer your question? You know about lab work and its variations depending on the test, sensitivities vary, specificities vary. PCR is more sensitive than EIA, etc. anything else? LOL. I didn't proofread this hope there are no typos.

mkh9

[mojogal]

First I should say these tests were done in Texas, sorry but their medical system and medical board is the worst.

The thing is they gave me, after that one blood test, steroids and I wound up in the hospital on a ventilator.

Thank goodness I was told by my nurse friend in Va who has Lyme, via phone to not take anymore steroids because I have Lyme. She recognized the symptoms.

[maylise]

Thank you so much for your response. You really got me thinking here because I was diagnosed with discoid lupus when in my late teens.Then when I first started having trouble with my thyroid 2 years after giving birth I also hade a big flareup of the discoid lupus.ESR was elevated in those days but now normal. I actually thought about lupus and asked my GP about the rash and if it could be the lupus.She didn't think so but suspected mites. The cream she gave me cleared the rash up in about 5 days,.nothing in the blood tests suggested lupus but  it could very well be anyway.Haven't got the butterfly rash and I never have. Know a lot of people with lupus.And they all have different symptoms as wellas the same ones.

[maylise]

Thank you
I contacted DR Mayne and another foundation here and got the name of a doctor who is willing to help people with lyme. He's not very far from me but the waiting list is long.At least I've got an appointment so I'm lucky there.
Maylise

[maylise]

Thank You
I guess it could be possible that I have Systemic Lupus and Lyme as well and because the treatments are so different it could clash. I know that steroids are not good with lyme. Plaquenil i had when very young for discoid lupus.
Maylise

[mkh9]

Yes the rash can be variable. Yes Plaquenil  is the drug that made my friend go blind (retinal damage). I hope that you can figure it out. The symptoms are what triggered my thoughts towards lupus. As you know avoid sun, and stress. My friend wears a large Solumbra hat. You can get them on line. They are expensive but I bought one and they are washable and help a lot for coverage. My friend and I both have the rosacea. I use Finacea but if you have used a topical steroid on your face then your skin would be too thin to use it. My friend uses those very low dose antibiotics, minocycline. It doubles to lower her immune system just a tiny bit and also clears her rosacea. Have you heard of these? Feel free to message me if you like. I can always ask her questions too.
take care,
mkh9

[maylise]

So sorry about your friend and what the plaquenil did to her....it's just terrible. Hard to avoid the sun where i live as it's here on most days of the year. In my younger years I did use hats all the time.....hubby was always reminding me as well in those days. I lost him to cancer 4 years ago and there has been a lot of stress in my life for the past 5 years. Have a lot of hats and will start to wear them now. Been bedridden more or less for months now so avoiding the sun have been easy. Years ago when I had discoid on my face i used cortisone cream and another one called synalar. synalar worked very well but not availabe here any more.
appreciate all the great advice!!!   Maylise

[mojogal]

So sorry about your husband. I was bedridden because my Lyme came out from an emotional situation that happened. Maybe mkh9 knows if you can get bedridden from lupus too? I am not sure about that. Its very confusing especially because it can be more then I thing wrong and I know if my friend didn't intervene, I would have still thought it was lupus.
Best of luck to you.

[maylise]

As I understand it Lupus can be hard to diagnose if there isn't a butterfly rash. When young I had a lot of discoid lesions on my back and at the time I was living in Sweden. Many experts there and they all diagnosed me with discoid lupus. Yesterday I got a call from the husband of a friend with Systemic Lupus saying that my friend passed away the day before. I knew she was bedridden a lot the last years. but she wasn't always. And many others are not either. Everyone is different.I agree with you it's all very confusing And if there is more then one thing going on at the same time with us it's all vey hard.I lost my GP of 20 years and finding a good one now has been very difficult..best of luck to you too mojogal    maylise

[cave76]

mkh9 said:

"To really develop Lymes a tick has to be on you for  36- 72 hours. "

That's what the CDC puts out. Still. After lo, these many years. That's no reflection on you, mkh9, since in your job you may have to abide by CDC standards.

But it's been disproved many times. I've collected 'tick spit' articles for over a decade. The spirochete has turned. :)


http://www.sciencedirect.com/science/article/pii/S1877959X1200012X

Excerpt

"When treatment was delayed until 24 h after tick removal, only 47% of mice were protected;

prophylactic treatment was totally ineffective when delivered =2 days after tick removal.

Although the dynamics of antibiotic treatment in mice may differ from humans, and translation of animal studies to patient management must be approached with caution, we believe our results emphasize the point that antibiotic prophylactic treatment of tick bite to prevent Lyme disease is more likely to be efficacious if delivered promptly after potentially infectious ticks are removed from patients. There is only a very narrow window for prophylactic treatment to be effective post tick removal."
*********************************

Also watch this video (from July of this year) where Dr. Stricker gives proof of the short time for transmission of infection. Obviously the longer an infected tick is attached the more probability of the person contracting the disease but being plucked off within a few minutes or hours CAN pass Lyme to the person. The video is 15 minutes long but 15 minutes packed with facts.

http://www.youtube.com/watch?v=f9zydWVwL7c

*******************************
I alwayys believed that they 36-48 hour attachment time (written in stone by the CDC) was false, but of course had no 'proof'. Then along came Tom Mather and his tick saliva tests. YAY! And more and more proof that a short attachment time can be a problem. Scientific proof.

I wonder how long before the CDC will assess those tests and change their timing. (Between 'in a pig's eye' and infinity?)

[mkh9]

Yes it sounds like you have been out of the sun. My friend says she stays indoors all day and goes out at night. But she does go shopping in the day time to get groceries. She wears her hat, long sleeves and so forth. Are you bedridden due to joint pain and fatigue mostly? I'm calling her today and will ask her if she has had these symptoms when out of remission. I'm glad your seeing the LLMD since they can diagnose both the Lyme and the systemic lupus. But, I wouldn't take the Plaquenil . She did take high dose Accutane for a short while. But that can also cause polyps on the brain (I take Topamax so polyp may not be the right word) but it is benign but still you don't want anything landing in the wrong part of the brain. i'll see if there is anything else she can suggest. She did tell me that lupus affects different parts of the body for different people and that is what I have read as well. Do you know what part of the body has been affected. For example do you have high liver enzymes or cardiac enzymes etc. suggesting a liver or heart problem? I know lupus patients can have kidney problems as well but a lot of that is due to use of steroids.  Well, I'm not suggesting you have anything. But since you have been bedridden and you weren't before maybe it has gone systemic. Or, perhaps you do have lyme. I hope that you can get things cleared up and you feeling better soon. Have you seen a rheumatologist for the lupus? Not that they have been any good for my friend. Actually, quite the opposite. Did you say you had the biopsy of your back lesions in the past? I'm just trying to figure things out. I hope you feel better soon.
mkh9

[mkh9]

No the clinical lab doesn't have to "abide  by the CDC's" rules. We abide by CAP (The College of American Pathologists) and CLSI (Clinical Laboratory Standards Institute) and ASCP ( American Society for Clinical Pathologists). There are a few other agencies. CDC just has guidelines that you can read like anyone else. The study you gave is interesting. I will take a look at it. But like any other single study they all have flaws. I would err on the side of caution and if I was bitten by a tick  I probably would get antibiotics for it because of all the stuff I heard on here, LOL. I probably shouldn't have stated the time frame but that is generally the standard they give in general. It sounds like there are other data that leaves things open to possible infections that we should pay attention to.
mkh9

[cave76]

You said:
" It sounds like there are other data that leaves things open to possible infections that we should pay attention to. "

Can you explain that please?

Yes, all studies have flaws. Some have more flaws than others.

"“All animals are equal, but some animals are more equal than others.”
― George Orwell, Animal Farm

You'd be wise to gulp down some doxy at tick bite time as long as you don't have any medical conditions that would make doxy dangerous for you,. There are ways to keep some at hand but doxy (tetracyclines) is one of the few drugs that the expiration date really means something!!! So don't keep them too long.

Waiting for a doctor's appt would put a person past the time I would consider as 'effective'.


The way that CAP et al. are beholden to the CDC is explained below.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC387619/
"For example, guidelines promulgated by the Centers for Disease Control and Prevention (CDC), often in conjunction with professional societies such as the American Thoracic Society (ATS), the Infectious Disease Society of America (IDSA), or the American College of Obstetricians and Gynecologists (ACOG) (12-14), and guidelines published by the National Committee on Clinical Laboratory Standards are closely followed by most clinical microbiology laboratories.

The reason for close adherence to these recommendations is that many are codified for purposes of laboratory accreditation and licensure by state laboratory licensing agencies, the College of American Pathology, or the Joint Commission on Accreditation of Healthcare Organizations. Reimbursement for laboratory testing is directly linked to laboratory accreditation, resulting in a clear incentive for adherence to the guidelines. It has also been shown that clinical practice guidelines have a medicolegal impact."

But that doesn't mean an employee has to believe the stuff the CDC writes about Lyme, in particular. :)