Lyme disease?????

[traceylou]

I know this is not related to my APS, but does anybody know about Lyme disease or a consultant in the UK pref NHS , my son has hypothyroidism-first thought of Cushings but with all the symptoms of Lyme Disease he is so frightened...please help

[butlertammy]

I'm not a dr, but back home in Wisconsin where I am from Lyme disease is very common. Almost always there will have been a very large 'bullseye' bright red rash (google it for images) where and when he was bitten... It would have been noticeable. If its caught early there are meds that you take fir a few months that can stop any long term symptoms.

I hope that helps

[laserlight]

Hi traceylou

I'm sorry your son has Lyme disease and more concerned that he's frightened. The good news is that it's treatable with antibiotics. The fact that you know how to spell it correctly (Lyme not lime!) indicates that you've most likely had a diagnosis which in itself is an achievement because Lyme disease can be difficult to diagnose and is often missed.

You probably won't need to look for a particular consultant as once it's been identified the treatment is well-understood. Your GP will probably start treatment straight away and may also refer you to a consultant. It would be preferable if your son started treatment tomorrow, Monday.

I hope you find this link helpful for yourself and so that you can reassure your son:

nhs.uk/conditions/Lyme-dise...

All the best to him and you,

John

[traceylou in reply to laserlight]

He has not been diagnosed yet we first thought it was cushings but that seems to have been excluded? The tell tell signs are the symptoms and the awful stretch marks that have been happening and are so advanced, as for the tick bulls eye the symptoms are so far advanced he cannot remember one although he has reacted to cat fleas in the past, he has been in hospital due to heart palpitations but nothing conclusive and far forward, he actually thinks that he is dying, he has been so ill now for 2 years and is now really bad. I understand there is no consultants in the uk???? What I can say is that something is low in his Igg, Igm etc.... Do not know what to do to help him, GP not very helpful, wondering whether to go and speak to him myself, any advice appreciated....

[laserlight in reply to traceylou]

How old is your son? If it is Lyme disease and he was infected two years ago without being diagnosed and treated, then it could be potentially very serious by now. I didn't mean there aren't any specialists or consultants who can deal with this in the UK because there are plenty. Once the 'bulls-eye' rash has disappeared though, it becomes harder to separate the symptoms of Lyme disease from those of many other conditions.

It's unfortunate your GP isn't more helpful. If you list your son's symptoms, I'll try to help with some pointers you can use with whichever doctor you see tomorrow. If your GP practice sees patients without an appointment on the day, you may find the duty 'emergency' doctor is different from the one you normally see. Thus, you'll get a fresh pair of eyes and an automatic second opinion, hopefully.

Also, I'll email a friend of mine who had a negative blood test for suspected Lyme disease and find out what symptoms she had together with diagnosis, treatment and conclusion. In the meantime, your son's age and symptoms might be helpful in compiling a 'shopping list' for your doctor. I hope you both get some action on this soon.

Best, John

[nyctapdancer in reply to traceylou]

I am so sorry to hear that your son has signs of Lyme. I've had it 3 times and had Erlichiosis (tick-borne) a couple of years ago. The theory is that Lyme precipitated my APLS, so this isn't something to be taken lightly.

You need to get your son on Doxycycline immediately - for one month.

ALL of the blood tests for Lyme are unreliable. And Lyme won't even show up for months after the infection - if it ever does.

One way to know if it's Lyme: you'll get a false positive for Syphillis. so ask for that test to be done also.

Smart doctors treat the symptoms. If they go away, it was Lyme.

That said, as we all know only too well, it's hard to find a smart doctor.

Insist on a course of Doxycycline NOW. if one doctor won't give it to him, go to another.

[Kjcoolong5 in reply to nyctapdancer]

Won't work!

[MaryF Administrator in reply to traceylou]

Hi there, I found this for you, I think for peace of mind it is important that you speak to the right people: 1. lymediseaseaction.org.uk/re...

2. Here is also a facebook contact group - not sure what the quality of information is like but worth a look: facebook.com/pages/Lyme-Dis...

3. and possibly some more info here; dorsetecho.co.uk/news/44190...

I think it may help to investigate through the charity, rather than us, as I do know of the disease but do not have personal experience of it! All the best. Mary F x

[jessielou in reply to MaryF]

Hi

Great links there, I have no experience of Lymes myself either, hope you find help and the correct medical treatment for your son.

Take care gentle hugs love Sheena xxxx

[Kjcoolong5 in reply to laserlight]

This information is not true. Lyme is very difficult to treat. Taking a course of antibiotics will not cure it. There is a very small window of time for that type of treatment and that rarely happens. This disease is rampet and being ignored! The best course of treatment is maintaining a very healthy ammune system and being aware of any deficiencies and food allergies/sensitivities. Having Lyme can cause your body to react to foods and that will cause more inflammation and a weaker ammune system. Until they take this seriously and find a cure, you can only feel better with this approach.

[MaryF Administrator]

Hi there, from my understanding of this disease, from friends I am on line with in the US, at times it is treated with too short a course of medication unless you see the right person: I found this for you. A group based in the UK: lymediseaseaction.org.uk/ I hope things work out ok for you.

Mary F x

[viv112]

You can ask your GP for a blood test which can show if you have ever been infected with the borrelia or Lyme disease.

[nyctapdancer in reply to viv112]

sorry, but the blood tests, and the spinal taps and every other test for Lyme are totally unreliable.

You treat the symptoms. If it goes away, it was Lyme.

[nyctapdancer in reply to viv112]

Actually the tests for Lyme are almost entirely unreliable

[SueLovett]

This is a 'tick born' parasitic disease. Your son would have to be bitten by a tick to get it.

The ticks usually come from deer but can be on sheep as well.

It is usually treated with doxicycline and anti-inflammetry medication.

One of my dogs was tested for it recently because she suddenly developed 'autoimmune mediated polyarthritis'. She was negative. It is harder to contract than people think but your doctor can do the blood test.

Hope this helps please let us know the outcome.

xx

[nyctapdancer in reply to SueLovett]

A tick can fall on you from a bird flying by. It is absolutely NOT hard to get Lyme. All ticks carry Lyme, not just Lyme ticks.

The symptoms: flu-like feeling, soreness in knees in particular and other joints as well, often low-grade fever, but you can have fever spikes as high as 105 that come and go, overall mailaise. It also masquarades as many other things.

I was told I had mono one of the times I had Lyme. It was Lyme. Doxycycline started clearing it up in a matter of 48 hours.

The longer ago the bite happened -- and only 30% of people ever get a bullseye rash -- the longer it takes to cure.

Lyme can cause arthritis, blindness and a lot of other horrible things. Don't wait to get on Doxycycline.

[tipi]

nyctapdancer is right ...ticks are on any animal (including us!) and only about 30% get the rash. I didn't get a rash, but had lyme. Doxycycline is needed for at least a month. You might need to 'shout loudly' with your GP..I did, having been told 'the deer in Bushey park don't have Lyme. Didn't get it in Bushey Park,got several ticks over three or more years and from all over the country, due to my work. Good luck

[Hidden]

Are we absolutely sure Hughes is not caused by Lyme disease?

I was told there are hundreds of different types of Lyme. Also what about similar diseases carried by blood sucking parasites like fleas and mosquitoes. And what about mycoplasma common bacteria which are very difficult to detect or culture? Mycoplasma are the smallest known living thing. Plasma means shapeless so they cannot easily be detected even using a powerful microscope. They are virus sized too.

Most diseases have eventually been shown to have been caused by parasites like bacteria or viruses. Cervical cancer-by a wart virus, stomach ulcer - by bacteria. Sarcoidosis-now treated with antibiotics. Tuberculosis - by bacteria. The odds are that Hughes is a side effect of some parasitic infection. Maybe an infection passed down through families?

Is Hughes just a side effect of other hidden diseases?

There are remarkable similarities between Hughes and Lyme disease.

[eciu in reply to Hidden]

***SORRY this page appeared at top of my news feed, but just noticed the thread I'm responding to is from 2 years ago***

This type of research is all I've seen related to antiphospholipid antibodies and lyme ... it suggests that lyme may be one diseases that can cause positive antiphospholipid antibodies, but doesn't go so far as concluding whether this is a cause of APS.

ncbi.nlm.nih.gov/pubmed/217...

ncbi.nlm.nih.gov/pubmed/340...

It's also not clear whether the positive tests are due to a cross-reaction with other similar antibodies, as with syphilis.

cvi.asm.org/content/6/6/775...

[nyctapdancer]

In fact my hematologist believes that Lyme may very well have precipitated APLS.

I've had it three times and I had erlichiosis a couple of years ago also.

[LymeWarrior_49]

Lyme disease can become chronic if not treated asap. I had Lyme for years and was misdiagnosed numerous times. I became reinfected and was put on steroids. This supressed my immune system and the Lyme bacteria along with the co-infections spread like wildfire. I became severely ill and was almost diagnosed with MS. I had strep and this time my test for Lyme came back a strong positive. So many doctor's aren't Lyme literate and many people are misdiagnosed. I hope your son is doing better now. I realize this post is 3 years old so I'm sure things have changed, hopefully for the better.

[LymeWarrior_49]

Oh, and for those who say Lyme disease isn't that much of a threat, I have news for you, it's a nationwide epidemic. It's bigger than AIDS. Go to Lymedisease.org and you'll find a wealth of information on Lyme disease. I've educated myself since I was diagnosed in December 2010. I had one year of remission in 2011, but am now unable to walk. I've seen every kind of specialist you can imagine. I've had more tests than I can count. It's not just ticks now, but mosquitoes, fleas, bed bugs. Anything that sucks blood can transmit Lyme. Even spider's. According to the CDC more than 300,000 people contract Lyme disease each year. Those are just the people who have been diagnosed correctly. Lyme also imitates over 300 different illnesses and diseases. I've done my homework and know what I'm talking about. It is a systemic illness and is now believed to be sexually transmitted because of the shape of the bacteria. It is a corkscrew shaped bacteria just like Syphilis. It drills through organs, eyes, your brain. Many who have been diagnosed with MS really have Lyme disease. It causes the white lesions on the brain just like MS. I lost my vision in my right eye after extreme pressure in my eye for 3 weeks and a year later in my left eye for a week. Unfortunately, tests for Lyme are inaccurate. I find it odd how a dog or cat can get a positive or negative Lyme test the first time, while humans don't have accurate tests for Lyme. This has got to change. It would save many much suffering and expense.