Lyme or not Lyme, need advice with diagnosis in UK

[Ivars]

Hi, I've been experiencing symptoms that might be lyme and I'm trying to figure out the next steps for a proper diagnosis of whatever I have. I'm a 24 year old male and my first symptoms started this May.

My current symptoms are - widespread joint, finger and back pain, nodules/bumps (on wrist, shoulder, rib and lower back), muscle twitching, ringing ears, sore throat, small isolated darkish red spots, chest and rib pain, weakness in legs, eye discomfort, burping/hiccups, enlarged nasal blood vessels, tingling in arms and legs in certain positions, very slight purple rash on chest. Other quite infrequent symptoms are bloated stomach, stabbing in stomach, pain when urinating.

Symptoms I've had that have more or less resolved - fatigue, dizziness/brain-fog, vertigo/motion sickness, headaches, difficulty to concentrate and forgetfulness, pain and pressure in the eyes, weight loss, heat waves and tingling on top of the head a few times.

Onset - 15th May wrists and forearm muscles started to hurt after PC use, I also had tightness and tingling in my arms. I stopped using PC and it was getting better. Around 6th of June I had a very bad sore throat and in a day or two my wrists got worse. The pain was different now too, it was pretty much just joints. Also my hands were a bit puffy with a warm/burning sensation. I had a very slight fever in the next 4-5 days. I felt very tired and sick like I had caught flu. During then the first nodule/bump appeared on my wrist. They are somewhat firm and painless. After a few days my elbows started to hurt a little bit. Around 18th of June, my knees and shoulders started to hurt. In a few days SI joints and lower back followed. The pain was highly migratory - each day a different joint would hurt. The fatigue was still there and I experienced dizziness or weird brain fog that's hard to describe. Around 22nd June chest pain and tightness started. Around 27th June very minor muscle twitching started. It got worse in the next few weeks, but has stabilized and gotten slightly better since then. It Usually happens before sleep or when relaxing and mostly affects my arms or legs, but I’ve had it in my fingers, on my back, chest and even upper neck near near ears, too. Around 20th July my ears started to ring and it's been getting more and more noticeable. The end of June and start of July was the worst since then my condition has stabilized and some symptoms even improved, especially during mid August and early September, but I've been feeling worse again in the last few days. The brain fog and fatigue seems to be coming back and my sore throat that never fully cleared has been noticeable again for the past week.

I've had a lot of blood tests. The only abnormal ones were slightly low D-vitamin (22 vs 30+), slightly high total bilirubin and albumin and double the normal conjugated bilirubin (liver tests). D vitamin supplements (2k IU per day) seemed to help with fatigue and brain fog. I was feeling the best when I was in California for two weeks at the end of August and have run out of the supplements for a week now. I saw a rheumatologist and a neurologist last week. The neurologist thinks my symptoms are post viral and decided to have and mri of brain and egm for muscles just in case. The rheumatologist thinks it's Ankylosing Spondylitis (my back pain is the worst of all symptoms, but I'm not sure how does AS explains my other symptoms) and I'll have an mri of my lower back/SI joints and right wrist. He also ordered a lot of blood tests (I don't know which ones yet), since I had done only a few of them in UK.

Regarding lyme - I don't recall a recent tick byte or a bullseye rash. I don't have facial paralysis and my neck only gets stiff after using a laptop or reading in bed. At the same time I've been bitten a few times in the past and definitely was exposed to ticks this spring and summer. I'm originally from Latvia where ticks are quite common and moved to London only at the end of July. Last time I was bitten was 2 years ago and I actually felt a little bit sick for a few days, but had no rash or other symptoms afterwards. I had an Elisa test in Latvia on 3rd of July, which came back negative with

IgM 6.2, borderline is 18-22, 22+ is positive
IgG < 5.0, borderline is 10-15, 15+ is positive

So while it was negative I've recently realized that I might have been tested too soon if I've been bitten recently, since I had some IgM and no IgG. Moreover, I was on amoxicillin for a week one week for my sore throat before the test which might affect the results. Thus I'm thinking of repeating it just in case, but after reading around I'm a bit unsure of its usefulness.

I would appreciate some answers or pointers (research papers would be great) to questions I have:

1. Does it look like I have lyme? Who with lyme has had similar or different symptoms? What were your test scores?
2. Could you recommend a doctor experienced with lyme in UK? The only one I can find is Dr Matthew Dryden in Winchester travel clinic. Can someone share their experience with him?
3. What's the sensitivity of Elisa and Western Blot? Some say it's 100 % after a few months while according to others it's around 50%. How does antibiotics affect the results, apparently they can prevent production of antibodies, but at the same time some people recommend to have a trial of antibiotics before the test to bring it out. So I'm confused about the contrary opinions. What are some good research papers on this topic?
4. What are the effects and risks for taking NSAIDs and/or DMARDs (methotrexate, anti TNF) if I actually have lyme instead of AS? How do they affect Lyme blood tests? I'll definitely avoid steroids.
5. What are the effects and risks of taking antibiotics for Lyme if I actually have AS or maybe something else?
6. Would a trial of antibiotics help diagnosis?
7. Are there other infections (viruses, bacteria) that would be worthwhile to look into other than lyme and its co-infections?
8. How is lyme different in Europe and is the diagnosis here more reliable?
9. Impact of vitamin D on Lyme?
10. Would my brain or back mri be helpful for supporting/opposing lyme diagnosis?
11. Anything else I should think or read about?

I realize these are a lot of tough questions and I'll of course need to decide for myself, but even a few pointers for some of these would very helpful for me try to understand this mess. Also feel free to ask more about my symptoms, I tried to keep it short, rather unsuccessfully, I must say .

 

[Ema]

Hi Ivars and welcome to PR...

I can't answer all your questions but I will say this is a rather contentious topic on PR and you will find many threads debating these very issues. I am reluctant to start that debate up again here again so I point you to the search function to find those threads.

You might also want to have a look at this site for information about Lyme testing.

http://www.betterhealthguy.com/lyme/testing

IgeneX is the gold standard in the US though there are other labs in Europe that are reputable as well. Hopefully some of our UK members can chime in on practitioners that treat Lyme. All I know is Breakspear.

I think AS is actually a bacterial disease as well...klebsiella.

http://www.hindawi.com/journals/jir/2013/872632/

As far as I know, MRI is not very useful in Lyme diagnosis although it can be used to rule out MS. However, many people with Lyme also have white matter lesions so it is not clear cut.

The risks of antibiotics must be weighed against the risk of not treating a progressively debilitating bacterial infection. I personally think some people overestimate the risks of a trial of antibiotics. Antibiotics are given out freely for a wide variety of conditions much more benign than Lyme like acne.

Best of luck to you!

 

[Jonathan Edwards]

@Ivars
There does not seem to be anything in your history very indicative of Lyme disease. The one thing clearly worth sorting out is whether you have ankylosing spondylitis, or more likely another variant of the seronegative spondarthropathy group of diseases. These are often post-infective - involving intracellular organisms of almost any kind (but not klebsiella, that was the bee in bonnet of my UCL colleague Alan Ebringer, which only he ever really believed in and has now been forgotten). Any rheumatologist in the UK should be able to diagnose spondarthropathy. If you want to check out Lyme go to an infectious disease physician at a univeristy hospital. 'Lyme doctors' tend to diagnose Lyme for a big fee based on unreliable tests. I am told that Igenix is the least reliable!

 

[justy]

There does not seem to be anything in your history very indicative of Lyme disease

He notes numerous tickbites, the last lot causing a feeling of unwellness immediately afterwards.

At the same time I've been bitten a few times in the past and definitely was exposed to ticks this spring and summer. I'm originally from Latvia where ticks are quite common and moved to London only at the end of July. Last time I was bitten was 2 years ago and I actually felt a little bit sick for a few days

I suggest Arminlabs in Germany for testing, sounds likely from my experience on Lyme forums and my own experience.

http://www.arminlabs.com/en

 

[Jonathan Edwards]

He notes numerous tickbites, the last lot causing a feeling of unwellness immediately afterwards.

He mentions bites but I do not think bites can be a useful diagnostic sign of chronic Lyme. Bites are too common to be any use in terms of probability. All of my family have had tick bites over the last five years and none of us has Lyme disease. Tick bites may be a useful diagnostic factor in acute Lyme, where the time span is short and the likelihood of bites in general is smallish. But when the time frame is indeterminate I cannot see that it weights the probability enough to be of any use.

 

[justy]

He mentions bites but I do not think bites can be a useful diagnostic sign of chronic Lyme. Bites are too common to be any use in terms of probability. All of my family have had tick bites over the last five years and none of us has Lyme disease. Tick bites may be a useful diagnostic factor in acute Lyme, where the time span is short and the likelihood of bites in general is smallish. But when the time frame is indeterminate I cannot see that it weights the probability enough to be of any use.

Bites + Symptoms = POSSIBILITY to be investigated.

 

[duncan]

Well, of course. Thank you, justy.

Chronic Lyme means different things to different people. The much-publicized Lyme wars, in the US, in part revolve around some elements of the IDSA claiming individuals with chronic Lyme never had Lyme to begin with.

So being bitten by a tick matters; it heightens the likelihood of exposure and infection. If untreated and unresolved by the persons own immune system, a Borrelial infection potentially could turn symptomatic in serious ways. Potentially.

Where I live, about 50% of ticks carry Lyme, so this is considered basic. Most children are aware of it. If you know you've been bitten by a tick, it may be prudent to get it checked out - certainly if you become symptomatic. Even if your symptoms occur months after the known tick bite.

 

[charles shepherd]

Worth watching this news video on 'false positive' Lyme Disease testing, and the overlap between Lyme Disease symptoms and ME/CFS, if you are thinking of spending a lot of money on controversial LD tests and treatments in the private medical sector.

Video: http://globalnews.ca/video/2098060/explaining-the-mysteries-of-lyme-disease

 

[duncan]

What if an individual should test positive on a conventional Lyme test?

And while you are issuing warnings about false positives, @charles shepherd , don't you think you should balance your advice with concerns about false negatives?

 

[Jonathan Edwards]

Bites + Symptoms = POSSIBILITY to be investigated.

I don't think that works, Justy. As a doctor faced with the possibility of chronic borrelia infection I would have to assume that the bite might have gone unrecognised. How many people with tick bites know they are tick bites? (I have only known the ones with ticks attached when I get to the shower are tick bites.) So I would have to consider the possibility even without a history of bites. I realise that doctors are often illogical and may think that a history of a bite is needed before they think of the test but I think that would be bad medicine. Diagnosis is always based on probabilities and for acute Lyme a history of a bite very recently would probably add weight, but over a long period I doubt it very much.

 

[duncan]

In the world of Lyme, knowing you have a history of being bitten often does matter, even past acute stages. A knowledgeable ID will frequently inquire about whether you noticed a bulls-eye rash. If no, then ask about any unusual rashes or bites, as Borrelia rashes often are not the iconic bulls-eye. Symptoms will be addressed and labs executed.

But most Lyme-savvy doctors I know would have their Lyme radar activated the second the patient conveyed they knew they had been bitten by a tick. It can raise the probabilities, regardless of stage, just to different degrees.

 

[Jonathan Edwards]

In the world of Lyme, knowing you have a history of being bitten often does matter, even past acute stages. A knowledgeable ID will frequently inquire about whether you noticed a bulls-eye rash. If no, then ask about any unusual rashes or bites, as Borrelia rashes often are not the iconic bulls-eye. Symptoms will be addressed and labs executed.

But most Lyme-savvy doctors I know would have their Lyme radar activated the second the patient conveyed they knew they had been bitten by a tick. It can raise the probabilities, regardless of stage, just to different degrees.

Sure a doctor will ask about a bull's eye rash - but that is specific to borrelia and far more relevant than a bite history. Non-sequitur again I am afraid. I am not sure where the world of Lyme is!!

Presumably if someone has gone to see a 'Lyme-savvy' doctor the issue of bites has already been raised. I doubt there is much radar activation going on. That sounds like rather soft evidence to me. And as I indicated I doubt in chronic situatins it affects the probabilities in a measurable or significant way. Maybe this is an indication that like most other doctors Lyme-savvy doctors are pretty illogical when it comes to weighing probabilities. I bet if you asked one of these savvy chaps they would have no clue what probabilities are involved - 68.2% against 29.3%? - I doubt it.

 

[duncan]

The Lyme-savvy doctors I consult are IDSA members.

I do appreciate you are not sure where the world of Lyme is, but IDSA doctors who specialize in Lyme are among the most conservative in the world.

I suppose there is a non-sequitur in this post of mine, but I'm ok with that.

 

[Ema]

'Lyme doctors' tend to diagnose Lyme for a big fee based on unreliable tests. I am told that Igenix is the least reliable!

Lyme testing through Igenex is fairly inexpensive. The Western blots are around $85 each for IgM and IgG. I paid the fee directly to the lab. My doctor isn't getting rich off testing or treatment of Lyme.

 

[Ema]

The one thing clearly worth sorting out is whether you have ankylosing spondylitis, or more likely another variant of the seronegative spondarthropathy group of diseases. These are often post-infective - involving intracellular organisms of almost any kind (but not klebsiella, that was the bee in bonnet of my UCL colleague Alan Ebringer, which only he ever really believed in and has now been forgotten).

So it's OK to believe that Ebringer was right without any published evidence or the support of his peers...but all the evidence of chronic Lyme is rot? Total hypocrisy.

As of 2013, a link still exists between klebsiella and AS according to peer reviewed journals such as this:

The Link between Ankylosing Spondylitis, Crohn’s Disease,Klebsiella, and Starch Consumption
Taha Rashid,1 Clyde Wilson,2 and Alan Ebringer1
1Analytical Sciences Group, Kings College, 150 Stamford Street, London SE1 9NH, UK
2Department of Pathology and Microbiology, Kings Edward VII Memorial Hospital, 7 Point Finger Road, Paget DV04, Bermuda

Received 22 October 2012; Accepted 23 April 2013

Academic Editor: Chung Tei Chou

Copyright © 2013 Taha Rashid et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Abstract
Both ankylosing spondylitis (AS) and Crohn’s disease (CD) are chronic and potentially disabling interrelated conditions, which have been included under the group of spondyloarthropathies. The results of a large number of studies support the idea that an enteropathic pathogen, Klebsiella pneumoniae, is the most likely triggering factor involved in the initiation and development of these diseases. Increased starch consumptions by genetically susceptible individuals such as those possessing HLA-B27 allelotypes could trigger the disease in both AS and CD by enhancing the growth and perpetuation of the Klebsiella microbes in the bowel. Exposure to increased levels of these microbes will lead to the production of elevated levels of anti-Klebsiella antibodies as well as autoantibodies against cross-reactive self-antigens with resultant pathological lesions in the bowel and joints. Hence, a decrease of starch-containing products in the daily dietary intake could have a beneficial therapeutic effect on the disease especially when used in conjunction with the currently available medical therapies in the treatment of patients with AS and CD.

Clinical and Developmental Immunology
Volume 2013 (2013), Article ID 872632, 9 pages
http://dx.doi.org/10.1155/2013/872632

 

[pattismith]

I would say that I am convinced that many Chronic Lyme diagnosed patients are not Lyme ill people (many tests are not reliable)...BUT many of these patients took benefit from the Antibiotic treatment applyed to treat this so called condition (azythromycin has proven some efficiency on some CFS patients).

Yersinia Enterolitica is another bacteria that can persist in cells an favor arthritis on the long run, and this bacteria is sensitive to Azythromycin and Doxycycline, two antibiotics used to treat "chronic Lyme"....

So we don't really know why it works but it works on many patients...

My mother was diagnosed "chronic lyme" with a bad testing (a western blot done in a controversial french laboratory that lost its licence not long after this).

At this time, I sent my blood to a more reliable laboratory in Germany to do a reliable Western Blot and it came back negative.

For this reason, it took me 6 more years before I realized that Azythromycin was efficient to reliase my back pains.

My mother's arthritis was already cured for a long time!

My symptoms were more or less the same than yours. I was convinced for 15 years that I was suffering from Spondylarthropathy, and I have visited 4 different rhumatologists in toto over 15 years.

They all told me it wasn't SPA or SA...
At the time I had my last apointment (6 months ago) I was half dead, so badly painful, so tired...
I caught the very bad flu during the european epidemia in Juanary. As my immune system is weak and as I am prone to bronchitis, it turned in a long bronchitis lasting 3 weeks. I took Azythromycine 500 mg /day, and it happened that my back pains disappeared immediatly.... After 10 days, I stopped azythromycine, and 10 days after the vertebral and tendons pains were back...So I took it again and started a longer treatment. It was very tiring, with new pains showing up (muscle pains), so I had to stop after 4 months, because I was not able to go further on it.

For the moment I have stopped Azythro/doxy 1 month and half ago, and the back pain didn't come back.
Hipnic jerks didn't come back either to date.

Some neurologic symptoms are still here, but I managed the muscle pains with supplements and they disappear progressively.

Now I am trying to look for other factors that may be involved in my syndrome, it lasts for 35 years, so it may be more complicated than for others!

My conclusion: if you find a lyme doctor that give you the treatment for Chronic lyme/coinfection, you may benefit from it, so try it!

Good luck, we are on your side!