Lyme Disease or not??

[lholt7]

Hi everyone,

I have been suffering from chronic pain and fatigue problems for nearly 2 years now and recently got tested for Lyme Disease. I live in the South West of England. I do not recall being bitten by a tick and neither do my parents but you never know. I never had a rash. My problems began after severe emotional stress over only a period of 3 months. I suffer burning skin, fatigue, shakiness, stinging skin, sore throats, occasional migraine, feeling of weakness. I have been diagnosed with Fibromyalgia but am not sure if this is the true situation or not. I am 25 years old and want my life back! I paid to have a Lyme testing with Igenex in California, not cheap! The IGM results are:

18kda -
23-25kda -
28kda -
30kda -
31kda -
34kda -
39kda IND
41kda +++
45kda -
58kda -
66kda -
83-93kda IND

The IGG results are:

18kda -
23-25kda -
28kda -
30kda -
31kda IND
34kda -
39kda -
41kda IND
45kda -
58kda -
66kda -
83-93kda –

My ELISA test was all negative.

Do you think this is Lyme? I have lumps under the skin in my muscle tissue which does point more towards Fibromyalgia but still get concerned about the possibility of Lyme Disease. I have heard that the Epstein Barr virus can cause a positive 41 band. I do (or have had) EBV in my blood for a while so this complicates matters a little. Should I be worried about the positive 41 band and the other indeterminate bands?

Any advice would be greatly appreciated!

Love Laura
25, south west England, symptoms since July 2011 after severe emotional stress.

[Ricobord]

Fibromyalgia is believed to be the most common misdiagnosis for Lyme patients.  There is no laboratory test.  The diagnosis involves a checklist of symptoms and counting how many pain points there are, or something along those lines. Unfortunately, plenty of Lyme patients meet the diagnosis.  If the meds help, then take them.  Just don't take any steroids or immune suppressants. They make a Lyme infection much worse.

Your test results are quite weak.  The INDeterminate response on those bands suggests that the lab tech saw something on that band, but not quite enough to register as a positive.  Many LLMDs consider a IND result as a positive in a patient with symptoms and history consistent with Lyme.  Weak results are consistent with late stage illness where Lyme has suppressed the immune system. It looks like your antibody production has dropped off below detectable levels.

I've also heard mixed feedback on the Breakspear clinic, as well as complaints about the cost. On gal here on this forum has said that the good Lyme docs left and the remaining docs aren't so good. I think their prices reflect the fact that they're pretty much the only option in the country. The NHS doesn't allow their docs to treat for Lyme beyond the guidelines.

If you'd like to get tested again, you might have better luck at Infectolab in Germany.  They test for European strains and species.  I believe there is another lab called Mikrogen that's also good.   The BCA in Augsburg is supposedly the best in Europe for treating late stage Lyme.  

Do whatever you need to do to get treated.  I know the cost can be daunting. But until the current medical conflict gets resolved, we patients get the short end of the stick.  The "establishment" rarely helps us with the long term treatment we need.

Hang in there. It sounds like you're on the right track. Let us know how your phone call goes.

[cave76]

" I do however think that fibro is an illness in it's own entity. "

That may prove to be the case. The ACR has already classified it:

"The American College of Rheumatology classify fibromyalgia as being a functional somatic syndrome.[22] The expert committee the European League Against Rheumatism classify fibromyalgia as a neurobiological disorder and as a result exclusively give pharmacotherapy their highest level of support.[22]

The International Classification of Diseases (ICD-10) lists fibromyalgia as a diagnosable disease under "Diseases of the musculoskeletal system and connective tissue" and states that fibromyalgia syndrome should be classified as a functional somatic syndrome rather than a mental disorder."

I sit firmly on the fence (no mean trick!) and fluctuate between thinking ---- no and yes. But remember the Australian doctor who discovered the bacteria H. pylori as the cause for stomach ulcers? Possibly the same will be found for FM.

My own experience with the diagnosis of FM------ never had it before I got Lyme. Then it went away almost completely when I achieved a 3-4 year remission of Lyme. Now it's back. What's up with that? So, co-morbidity? Chicken and egg? Maybe.

Wikipedia has a fairly good (and long) discussion on it. With citations. Normally Wiki isn't my 'go-to' site, except for the start of investigation or to quote here for people who don't like medical treatises.

Right now there are people who will 'go to the mat' before admitting that FM might be a 'disease'.

I say the jury is still out and I just don't know. But you may be right in times to come.

What I found interesting (at Wiki) was mention of severe stress being a trigger. Didn't you say you'd just had some such episode?

[lholt7]

Thanks for the link. I'm keen to get on another antibiotic rather than Doxy. There is also the issue with sun sensitivity on Doxy, that can be a major issue!

I find it so difficult how elusive Lyme/Fibromyalgia are as illnesses. I understand that there have been tests done and scientists have found that people with Fibromyalgia have different proteins in the spinal fluid to those with Lyme. I think that many many people who have Lyme are told they have Fibromyalgia as a diagnosis. I do however think that fibro is an illness in it's own entity.

Love.

[mojogal]

Just realized Jackie said the same thing regarding Fibromyalgia above.

[mojogal]

Just so you realize, I was diagnosed with fibromyalgia, MS, lupus, CFS, EBV, Hoshimotos, hemochromatosis,vasculitis and I am sure my brain fog is preventing me from remembering the rest. It was all Lyme which is called the great pretender as it can mimic so many other illnesses. Many LLMD say that fibromyalgia is given to people as a catch all diagnoses when they really don't know what you have. In many cases it is Lyme.

[cave76]

Seems like you're trying to get the best help possible in the UK. That is almost harder there than in the U.S.

You mentioned doxy: Please read this link'

http://www.medhelp.org/posts/Lyme-Disease/Doxycycline-expiration-date/show/1954933

[lholt7]

I had the Doxycycline left over from a recent trip abroad as it is also used as an anti-malarial. I have a telephone consultation with the Breakspear director on Tuesday morning however so I will wait for her advice.

Most people in the UK seem to use Breakspear for Lyme. I researched and saw they used Igenex for testing so went with them on that basis. So far they have been good but very expensive! I am obviously very worried about the costs involved - I am a single girl in my twenties. I'll just have to wait and see.

As for the Guaifenesin - this is fantastic protocol from which I am getting good results. It was developed by a fully-trained doctor in california and thousands follow the treatment to good health. Guaifenesin has no side effects at all. I follow the plan as I am confident that I have Fibromyalgia - this has been confirmed by a Rheumatologist. However it is obviously very similar in symptoms to Lyme - hence getting tested. For all I know I have both FMS and Lyme.

Thanks everyone for the advice!

[cave76]

Do you have confidence in Breakspear for treating Lyme disease by proven evidence based methods?

I've heard conflicting stories about Breakspear from people in Europe.
If they've sent your test to Igenex that's a fairly good sign and I hope they'll treat you until most symptoms are resolved, which might take months or even years unless you've just recently been bitten.

Recently = in the past few weeks---- and I just re-read your OP and see that's not the case for you. But----- you can get better with correct treatment courses and time.

[mojogal]

I agree if a Lyme doctor told you to take the doxy, that is fine but I would not take it unless given by a Lyme doc and I would definitely not follow the other protocol unless given to you by a Lyme doctor.

There are a million and one Lyme protocols written and on Amazon but I would not follow any without the advice of an LLMD.

[JackieCalifornia]

You say above:  "I actually already have some Doxycycline and was looking to start 400mg per day. If Doxy is not effective, which antibiotics would you recommend?"

Did the Lyme doc prescribe the doxy for you?  If not, I would NOT take it now.  Wait to see what the doc says -- that's what the doc is for.  Freelancing in treatment is a bad idea, because it messes up what the doc is trying to do for you, changes your test results, and creates general chaos.

You also say:  "I am following (and have been for the last 3 months) Dr St Amand's Guaifenesin Protocol for Fibromyalgia."

Unless your Lyme doc has told you to take this or has specifically approved it, I would not take it either.  You are not getting the benefit of an MD's education and experience if you freelance on your treatment on the side.  It's like hiring a world-renowned chef to cook for a dinner party and then sneaking into the kitchen and adding salt to the meal -- trust the chef -- that's what you're paying for, and adding salt without the chef's knowledge and agreement is too risky.  So why do it?

[mojogal]

I had been bitten over 20 years ago but only My kids remembered this as toddlers, I didn't. My treatment started only 14 months ago and I started on 400 MG of doxy and I had herxing episodes so I think its a good starting point.

[lholt7]

Thank you both for your replies.

I don't think I'll ever know for sure whether I have Lyme or not! I have been working with a Lyme literate doctor at the Breakspear clinic just north of London, this is where I got the Igenex testing done. Unfortunately her services are very expensive and I very much doubt there are any Lyme doctors on the NHS. I will be seeking her advice again on Tuesday now that the results are back.

I actually already have some Doxycycline and was looking to start 400mg per day. If Doxy is not effective, which antibiotics would you recommend?

One more thing to mention - I am following (and have been for the last 3 months) Dr St Amand's Guaifenesin Protocol for Fibromyalgia. I have been experiencing some positive results from this, the guaifenesin feels as though it is cleansing my body from the inside. I believe that Guaifenesin may have positive effects on Lyme too.

Any more help on which antibiotics are best for chronic Lyme would be greatly appreciated!

Thank you both
Love Laura

[JackieCalifornia]

PS ... doxycycline is not always effective against what ails you.  If it is given very shortly after the bite, then it can be, before the bacteria make themselves at home and go hide in cartilage and in 'biofilms' they make in the body, where the immune system can't locate them.

Because many of us do not know when we were bitten, there is no measuring point from the date of the first bite to the doctor's office, and it is also possible to be bitten more than once.  For example, if you are bitten and don't know it, and don't get very ill, and then are bitten AGAIN some time later, doxy might work on the more recent bite, but not on the earlier one.

Also, other infections the same ticks often carry usually don't respond to doxy at all.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Good for you for having the tests run --
.
Many of us (including me) never saw a tick and never had a rash.  'Emotional stress' could have lowered your immune system, but it would not cause the infection, any more than being stressed will cause someone bitten by a disease-carrying mosquito to get malaria.  

I suspect, but have no proof, that docs who do not understand or 'believe' in Lyme as something serious are the ones most likely to focus on the patient's emotional state, because that view matches with the fibromyalgia diagnosis.  'Fibro' is not a disease, but a syndrome, which is a collection of symptoms with no known cause.  Docs are too often prone to call such an ailment with no obvious cause as psychosomatic or (in women) either hormones or hysteria or whatever.

Fibro is a catch-all category that the docs can't figure out, and there is suspicion among Lyme docs that 'fibro' is .... yes, Lyme.  Funny how the symptoms all line up between the two.  Also, after the standard few weeks of doxycycline that a nonLyme specialist will prescribe, the nonLyme docs then attribute continued symptoms to so-called 'post-Lyme syndrome -- yet another vague term that is supposed to mean that the Lyme bacteria are dead and gone, and any continuing misery is an over-active immune system reacting to the now-gone infection.  

Yes, non-Lyme docs use any excuse is used to avoid the most likely cause of the continuing misery:  an unresolved infection.  Lyme is a recently recognized infection (~20-30 yrs ago) caused by bacteria similar to that causing syphilis -- tiny, spiral-shaped bacteria that can burrow into tissue where the immune system cannot find them and drugs (except certain types) cannot act against them.  

The MDs who did first serious research on Lyme made some assumptions about Lyme that have not held up under more recent research, but those early, prideful MDs are still practicing medicine, and they have far too much sway over the still-current diagnosis and treatment standards adopted by infectious disease ("ID") MDs, rheumatologists, and others who claim superior knowledge in this realm.  It is quite a scandal which is not yet resolved, which leaves patients in the middle.

Fortunately, there are some MDs who are not locked into a decades-old analysis of Lyme and have continued to research and learn.  These more thoughtful MDs are sometimes called LLMDs by their patients (us), which is shorthand for 'Lyme-literate MD', meaning a doc who understands Lyme better than mainstream medicine.  (No doc refers to him/herself as an LLMD, and it's not a diploma or degree, just patient slang.)

So that's the history.  Now to your tests, focussing on the "+" lines (there is a website called truthaboutlyme [dot] com from which I printed out the list of bands below):

(An 'IND' result means 'indeterminate' (that is, maybe/maybe not), but a Lyme specialist would likely say that if it's *not* negative (-), then it's a weak positive (+) and should count as a positive, so here are the INDs and +s only.  ---   Also, IgG and IgM are immunoglobulins (Ig) your immune system makes against an invader; the IgM are made soon after infection, and the IgG are made as the IgM fades and the infection is more settled in, so both IgG and IgM count:)
--------------------------------------------------------------------------------
          
(IgM)

39kda IND:  Band 39 is specific to Lyme, meaning NO OTHER bacterium will cause this band to show positive

41kda +++:  Band 41 is positive in the presence of any spiral-shaped bacteria, so it could be Lyme, or it could be something else

83-93kda IND:  83 is a specific antigen for Lyme, probably part of its cell membrane, specific again meaning it shows up ONLY in a Lyme infection
--------------------------------------------------------------------------------

(IgG)

31kda IND:  this is 'outer surface protein A (OspA), which is specific to Lyme  (that is, shows up ONLY in a Lyme infection)

41kda IND:  this is a protein that is part of the whip-like tail of a spirochete (spiral-shaped bacterium), includes Lyme, along with some other infections
--------------------------------------------------------------------------------

I am not medically trained, but with these results, I would certainly pursue further Lyme consideration and treatment, as well as testing for other possible infections often carried by the Lyme ticks.

Non-LLMDs tend to use the older and less accurate ELISA and Western blot tests rather than the IGeneX tests discussed above.  ELISA and Western blot are often negative a while after the Lyme infection happens, because ELISA and Western blot look not for the Lyme bacteria DNA (as the IGeneX test does), but instead for your immune system's reaction to Lyme bacteria in your blood.  

W.blot and ELISA tests are older than the IGeneX tests and are based on looking in your blood for antibodies made by your immune system to kill the bacteria.  The theory is that if there are not antibodies, then the infection is gone, because the immune system is designed to kill bacteria long enough to wipe them out during several of the bacteria's short reproductive cycles.  

This works against most bacteria, which have relatively short reproductive cycles, but does not work against a few such as leprosy (Hansen's disease) and tuberculosis (TB), which both have long reproductive cycles.  The standard treatment time for Hansen's and TB?  18 months.  Lyme should be in that category as well, but the docs who first 'discovered' Lyme in the last few decades did not understand this, and so a short course of antibiotics (a few weeks, not months) is all that nonLLMDs usually prescribe for Lyme.  (And remaining symptoms?  must be fibromyalgia!  see above.)

So an LLMD will usually use different tests (IGenex), will treat for longer, and will use different meds to pierce the slimy shields the Lyme bacteria hide in (called bio-films).  
----------------------------------------
As to your symptoms, everyone seems a bit different in how their illnesses present, partly due to the different co-infections, which are additional infections carried by the Lyme ticks.  A good LLMD will ask many questions about your symptoms, to determine what infection(s) other than Lyme to test for, and then to prescribe additional meds focussed on killing the co-infections.  About half of all Lyme patients have at least one co-infection, and two or more is not uncommon.

You also say:  "I have lumps under the skin in my muscle tissue which does point more towards Fibromyalgia but still get concerned about the possibility of Lyme Disease."  Lyme can cause lumps like that, but I don't know much about why.  I do know however that fibromyalgia is not a disease -- it is a collection of symptoms.

I hope this is not too much data.  Let us know if we can help, and also go to ILADS [dot] com, looking for Dr Burrascano's diagnostic and treatment guidelines on the ILADS website.  He is a well known and very wise LLMD.

My best suggestion:  find an LLMD for further testing for possible co-infections, make a treatment plan (which infections to address first), and then get well!

Let us know how we can help.  Best wishes to you --

[cave76]

@ Linda,

I'm glad you paid for the Igenex test because that's one of the very few labs that will test as best as can be----- even Igenex admits that the Lyme tests aren't the gold standard.

About band # 41---- I would dare say that most of us have that band and it is usually not an issue. Oral spirochetes in the mouth (not Bb) will produce that band in a person. So, toss that worry out---- at least for the time being.

No rash or bulls eye is common for about 50% of the people who actually have Lyme.

It's important that you find a doctor in the UK that will treat you by non-IDSA standards. (They've put out a guidelines that say 10-30 days of an antibiotic----- you're cured! And most doctors in the U.S. and UK follow those guidelines.

There are a few people here who are in Europe or UK and they may be able to tell you of a doctor in your area.

Do you already belong to the Lyme disease forum in the UK? I can't post the link because of this forum's rules but maybe someone else will be brave or will PM you the link. (There are two----- one is very science oriented and the other is more for people like yourself.)

It would be impossible to know for sure in a forum such as this if you truly have Lyme or not. But it's important for you to try to reach an understanding doctor.

As far as fibromyalgia?---- It's the diagnosis we all get. Sure, we probably have it and it's painful------ but other than that it's a garbage diagnosis as as being a 'disease'.