Has anyone any experience of Lyme Disease?

[Estherfromjerusalem]

My best friend's daughter has been feeling not well for about two years, and her condition is very slowly but steadily deteriorating (she's 47 and the mother of five children). It was stomach aches, and lots of joint and muscle pains, and all sorts of things. She is very very tired. Now all of a sudden a diagnosis (still to be finally confirmed, but it has shown up on one blood test): Lyme Disease. I've been looking on the internet, and it's pretty grim if not treated. Caused by a tick, and she remembers being bitten at around that time. I wondered if any of you have had any experience with this, especially if left untreated for such a long time.
Thanks.

Love, Esther

 

[hearts and roses]

Hello Esther, it's been ages since I've been on the board, but someone tipped me off that you had a question about Lyme.

I have chronic lyme. After YEARS of seeing DR after dr and having a multitude of tests, ctscans, mri, etc., I was finally diagnosed clinically by a lyme specialist. I tested positive back in 2010 and was treated with a short term, standard antibiotic protocol. Eventually, all my symptoms came back and then some. That, and other things, led me to do my own research and find answers. At 48, it didn't seem right that I would always feel sick.

The kind of dr that needs to be seen is an LLMD, which stands for Lyme Literate Medical Doctor. Some are actually physicians assistants, naturopathic doctors, etc. It doesn't need to be an MD, but it needs to be someone who is up on the latest research.

I suggest you look at the following websites to get help in finding a medical person to help:

www.tiredoflyme.com
www.ilads.com
www.lymedisease.com
www.lymenet.org

Also, on Facebook, there are various pages with lyme disease support. There may be one in her area or, if not, she may be able to at least find some decent resources she can use.

I am traveling right now and using my laptop, which hurts me to type on but I will check back and if you PM me your email I can provide further information.

**Lyme disease, according to the CDC, only affects 300,000 people per year. The CDC just recently amended that to 1,000,000 per year. Also, the CDC and FDA do not recognize chronic lyme, however, they do recognize acute lyme and long term lyme. The reason for the distinction may seem like simple semantics, but the truth is they don't want to call it chronic...that would mean epidemic and it would force them to put money into research, which they don't want to do. Millions of people are diagnosed with things like ALS, MS, fibromyalgia, chronic fatigue syndrome and various other disease that have little to no explanation when really, all along, it was lyme.

I could go on and on, as I've done a TON of research and read hundreds of studies. Look into the links above. Be well.

 

[susiestar]

Lyme is nasty. There are actually forms of it that make you a vegetarian. You end up getting very ill from eating meat. It is NOT called Lyme, and many lyme docs are not terribly aware of this. I figured it out after reading several serious articles about tick bites making people unable to eat any form of meat. The tick that it is attributed to is the same one that causes Lyme, so gee, could they be related? Hmmm.... seems obvious as the nose on my face, but no one has made the link in literature that I have found. I have not done extensive research though on this aspect. There was a mom here who's difficult child became a mostly easy child after lyme treatment had some time to work. The poor kid still has problems, esp health related, but the difficult child aspects have seriously decreased and/or mostly disappeared.

A lyme literate doctor is a MUST. Most docs don't really give credence to lyme or pay enough attention or do the right tests. This is, in my opinion, because if anyone put the info into the mainstream medical community, it would be an epidemic and people would be furious that it was ignored for so long and so many suffered.

Not all cases of fibro, etc.... are lyme, but lyme should ALWAYS be ruled out by a good lyme literate health professional before it is assumed it is not lyme. I got lucky and got a lyme-literate doctor early on who ruled it out using the right tests and not the standard ones.

don't let ANYONE tell your friend she is hysterical, imagining it, needs a psychiatrist or therapist because her symptoms are not real, etc.... Sadly MOST women, including myself and my daughter and my mom, go through quite a lot of this for years before the correct diagnosis of a chronic health problem is discovered. I just fired a doctor for the last time because her nurse told me that I needed to see a psychiatrist inpatient (and had arranged a bed for me! grrr) because I did not want to spend $50 a month on a brand name rx until I tried the generic form (for $4). The doctor, the nurse and I had gone through this once before iwth the nurse trying to send me inpatient for 'imagining' that I had more than 10 migraine days a month. Nurse flat out said it was impossible to have that many migraines a month so I needed a psychiatrist to treat my 'conversion disorder' instead. The doctor was flabbergasted and furious, so I gave her another try. She is great with my husband, but I won't go back because the nurse pulled this koi again and the doctor brushed it off as a personality conflict between the nurse and I, rather than the nurse being wildly inappropriate and unprofessional! Heck, my psychiatrist doesn't think I need regular sessions or medications, so who is this nurse to arrange an inpatient stay with-o even asking the reg doctor, much less the psychiatrist?

I am far from the only female to have this experience. for years there was a lupus and chronic pain support group in my area and the average was six doctors over five years giving each female some sort of conversion or hysteria or hypochondriac diagnosis (somatic disorder is another name they use to mean you are nuts and are making yourself hurt because you have emotional or mental health issues). while conversion is a real problem, around here it is only given to women and girls. Our largest pediatric practice gives this to every female patient of the four main docs at least once, and often it is for some illness like strep throat. Male patients get labwork and medication, but females from age 12 on get therapist/psychiatrist referrals most of the time. It has become a MAJOR issue and those docs are about six mos from losing their licenses for this after 2 girls almost died from untreated strep infections that were diagnosis'd with conversion and given depakote rather than antibiotics. I wish I was making this up.

from support groups iwth other women with similar health issues, it is almost universal that we have to fight through the psychiatric diagnosis koi and do our own research to find out what is wrong and then we convince doctors to treat us for it. This is pitiful, but is also reality in many areas. Support your friend to know that her problems are real and are not her fault or a result of stress in her life, but instead are the result of an actual illness.

I will see if I can figure out who it was who had the daughter with lyme and will send her a pm to contact you. I know she knows of a doctor in Dallas that she and her daughter travel quite a distance to see.

 

[susiestar]

Oh, the graphing of lab results that I described on the liver lesion thread is incredibly important with ANY chronic health problem. PLEASE help get your friend and any other loved ones with health problems to do this. You would be amazed at how much easier it is to figure out what is going on when you can see the results over time and not just a snapshot of if they are within normal range on a certain date. it truly can be the key to an early diagnosis of whatever is going on. At the very least, encourage your friend to get the actual lab results and not just the letter where the doctor says it is all 'okay'. when she has time or you can spend time with her, you can go back over them and get them organized and graphed if it cannot be done right away.

 

[Estherfromjerusalem]

Thank you for your replies. Sounds not very encouraging, I must say, even sinister. Oh well. I don't know if we have that sort of specialist here in Israel, although our health services are very state-of-the-art so maybe we do have a Lyme Literate Medical Doctor. I have printed out this thread, and also the one on liver lesions and making graphs -- thank you Susie. We will see what happensn with her and what treatment she gets. One doctor hinted to her that the medications are more harmful than the illness -- sounds horrid. Anyway, thank you for your input. I will pass the print-outs on to my friend.

Love, Esther

 

[Scent of Cedar *]

Where we live, the same ticks that carry Lyme carry erlichiosis.

Treatment with antibiotics (Tetracyline, In the case I am familiar with) was successful.

That was some years ago. Resistance to tetracycline may have been built up.

It was an infectious disease specialist who diagnosed and treated this illness.

Here where we live, Lyme and erlichiosis are common. Blood test will often come back negative. Early treatment after a bite with bullseye response is prudent thing to do. Doctors outside our immediate area are averse to Lyme. It's like it does not compute, for them.

I'm sorry this is happening to your friend.

Esther, it's very nice to see you!

Cedar

 

[hearts and roses]

Anaplasmosis

Mycoplasma

Babesia

Bartonella

And more!!

On netflix or hulu you can watch a movie called 'Under our Skin'

It will both educate and horrify.

Sometimes, depending upon how long the person has been infected and if there are any Lyme coinfections (there usually are), the treatment can be very long and even debilitating at times. A good dr will try to help with immune boosting support and liver support.