Seeking Lyme Advice

[Vitalic]

Hey all, I've been a member of this forum for a good few years now and in that time have made very little progress with my own condition, which was and is still presumed to be ME/CFS. I am based in the UK and in 2011 had a bunch of tests undertaken by the Breakspear clinic, they mostly came up blank with the odd abnormality, gut related issues and such.

Recently, we went back and looked at anything that may have been missed, and realised that Breakspear may have overlooked something with regards to Lyme, because while the serology came back negative there was a partial positive on the MELISA/WB results. These results can be viewed here:

Serology: http://i.imgur.com/fk4V2lA.jpg
Western Blot: http://i.imgur.com/eRud5L0.jpg http://i.imgur.com/vlEpZk3.jpg
MELISA: http://i.imgur.com/8mZEOWZ.jpg

We also noted that my sister who is also sick (diagnosed with CFS) was bitten by a tick within a few months of the onset of her illness, and even had the EM rash (we live in a supposed hotspot for Lyme). However her serology was also negative, wanting some kind of confirmatory test to rule it out once and for all we decided to get LTT/CD57 tests performed.

Her results: http://i.imgur.com/IiSTxqY.png
My results: http://i.imgur.com/CveRtKn.png

As you can imagine, I was pretty shocked to see the striking results for my sister, and dismayed at the lack of findings in my own. However given that it was not an unequivocal negative I decided to have a re-test performed after taking a course of Doxycline with the hope that it might stimulate an immune reaction.

My results: http://i.imgur.com/azb5X3I.png

This appeared to be a weak positive but a positive all the same, so that is two independent LTTs indicating presence of infection separated by a time span of three years. As well as the second LTT I also had a PCR test performed by redlabs, which came back negative.

So I am left in a predicament, I know there is a reasonable possibility that the LTT results may be false positives, but do you feel there is enough evidence here for either myself or my sister to continue exploring the Lyme avenue? And if so who are the best clinicans to see in Europe? We are contemplating seeing Dr. DeMerleir but I am skeptical about the value in this given how snowed under he is and some of the reports that have surfaced of poor standard of care in the last couple of years. Needless to say the health service here is no use since they flatly reject anything outside of the standard 2-stage serological testing.

Any advice on this matter would be greatly appreciated.

 

[Hanna]

Hi Vitalic,

I am in no way able to give a diagnostic, but your results seem to be positive for Lyme (and your sister without any doubt). And the low CD57 count tells you it is a chronic situation.

You are in good company on PR as there are several patients who are treated by KDM and seem pretty satisfied by his approach. You may contact for example Sushi, Valentijn, Clodomir, Justy etc for more report. The advantage is that he sees the Lyme thing but with an extended knowledge of a ME doc.

Have you undergone the questionnaire of dr Horowitz, a well-known LLMD. It is very instructive?

Needless to say tha it is a shame your sister with a rash EM wasn't qualified for Lyme treatment, and that the Breakspear didn't notice your results. A shame, but not so unusual .
One good thing is that you and your sister have some hope now to get better with treatment.

Good luck!

 

[xrunner]

had a bunch of tests undertaken by the Breakspear clinic,.

What did your breakspear doctor say, what was the diagnosis?

My own view is that you've got two positive test Melisa and LTT, plus a low CD57 count. This should ring a bell, to say the least considering you live in an endemic area and your sister's history.
In addition it is quite significant that the LTT returned positive after a course of antibiotics.
I assume your doctor suggested the course of antibiotics.

The following is taken from Burracsano's Lyme guidelines:
"An unfortunate corollary is that serologic tests can become less sensitive as the infections progress, obviously because of the decreased immune response upon which these tests are based. In addition, immune complexes form, trapping Bb antibodies. These complexed antibodies are not detected by serologic testing. Not surprisingly the seronegative patient will convert to seropositive 36% of the time after antibiotic treatment has begun and a recovery is underway. Similarly, the antibody titer may rise, and the number of bands on the western blot may increase as treatment progresses and the patient recovers. Only years after a successfully treated infection will the serologic response begin to diminish."

Apart from that, Lyme disease should always be a clinical one exactly because tests aren't reliable.
What did your breakspear doctor say, what was the diagnosis?

 

[Vitalic]

I am in no way able to give a diagnostic, but your results seem to be positive for Lyme (and your sister without any doubt). And the low CD57 count tells you it is a chronic situation.

Yes that is my impression, although I am trying to examine our cases separately as I don't want to make the dangerous assumption that if one of us has it both must do. Interestingly we also have cats and they often bring in ticks, pulled a big one off our oldest cat recently and it finally dawned on me that this is a possible explanation. Although I was working in London for quite some time before I became ill and would have only been back in the countryside for a few days at most, so I still find it hard to believe, especially being the skeptic that I am. I have heard that Borrelia can activate after several months but I am not sure what evidence there is for that.

You are in good company on PR as there are several patients who are treated by KDM and seem pretty satisfied by his approach. You may contact for example Sushi, Valentijn, Clodomir, Justy etc for more report. The advantage is that he sees the Lyme thing but with an extended knowledge of a ME doc.

That is good to know, I would love to find out what the treatment protocol involves, what the long term costs are (roughly speaking), does he feel IV antibiotics are ever necessary etc.

Have you undergone the questionnaire of dr Horowitz, a well-known LLMD. It is very instructive?

Yes we have, I cannot recall the scores exactly but my sister was off the charts and I was firmly positive.

Needless to say tha it is a shame your sister with a rash EM wasn't qualified for Lyme treatment, and that the Breakspear didn't notice your results. A shame, but not so unusual .
One good thing is that you and your sister have some hope now to get better with treatment.

My sister like me is negative on Elisa/WB so the GP here won't do anything. Makes no sense really considering the LTT Elispot is CDC/FDA approved and her results couldn't be any more clear cut.

My own view is that you've got two positive test Melisa and LTT, plus a low CD57 count. This should ring a bell, to say the least considering you live in an endemic area and your sister's history.
In addition it is quite significant that the LTT returned positive after a course of antibiotics.
I assume your doctor suggested the course of antibiotics.

The decision to take a course of antibiotics prior to the re-test was my own, precisely because of what you mentioned here. I knew that if it is Lyme in my case the infection must have been present for at the very least 5 years, and it seemed logical since it could reduce the chance of a false-negative without increasing the chance of a false-positive, although I did have the concern that it might impact on any treatment further down the line, as I have read Burrascano saying that patients are less responsive to intravenous/intramuscular antibiotics if they had already been exposed to oral antibiotics.

Apart from that, Lyme disease should always be a clinical one exactly because tests aren't reliable.
What did your breakspear doctor say, what was the diagnosis?

They did not give any diagnosis, the thinking at the time was that I might have a jawbone infection because I'd had two failed root canal treatments and a CT scan showed presence of infection, however that has long since been ruled out as the cause *shudder*.

I think partly because I was living/working in London at the time they did not consider me to be at risk of Lyme, but had I known what I do now I would have surely mentioned that I sometimes go back to see my family in the countryside. Even so, the fact they did not encourage any kind of follow up or further investigation into the initial Lyme results has left us kind of annoyed, that really could have set my sister and I back years. I spent months thinking I might have a psychological problem, making trips to the hospital for CBT/GET, can't even get angry about it anymore.

Thanks for your input though guys.

 

[Sushi]

....We are contemplating seeing Dr. DeMerleir but I am skeptical about the value in this given how snowed under he is and some of the reports that have surfaced of poor standard of care in the last couple of years. Needless to say the health service here is no use since they flatly reject anything outside of the standard 2-stage serological testing.

Any advice on this matter would be greatly appreciated.

Your original LTT had 3 ones. One of Prof. De Meirleir's patients also recently had 3 ones and he commented (as was reported by the patient here) that 3 ones, in accumulation, was more indicative than, say, 0,1,0. Since after a course of antibiotics you went to 4, 2 -- to me, that looks like a clearly positive reaction. The LTT is supposed to measure the activity of the infection, so that could make sense.

Also, if you are low in lympocytes they need a larger blood sample to get an accurate reading, so that is sometimes a factor.

As far as Prof. De Meirleir, I am very happy with his care. If you accept that he is extremely busy and that you will have to wait at least 3 months for your initial test results and his report analyzing your situation, you are fine. I schedule phone consults periodically for consultations and this works well. Also, on the occasions where I have needed his input urgently, I received a reply to my email in one or two days.

Hope that helps! You might read @justy's recent post about his level of concern and response to her urgent situation.

Sushi

 

[Vitalic]

Your original LTT had 3 ones. One of Prof. De Meirleir's patients also recently had 3 ones and he commented (as was reported by the patient here) that 3 ones, in accumulation, was more indicative than, say, 0,1,0. Since after a course of antibiotics you went to 4, 2 -- to me, that looks like a clearly positive reaction. The LTT is supposed to measure the activity of the infection, so that could make sense.

Yes, although I am surprised that as little as 3-4 weeks of antibiotics could have such an impact on the results. For the first 2-3 weeks I noticed no change in my condition whatsoever, but then deteriorated massively in the final week in the period I had the samples taken for the re-test, I am not sure if it constituted a "herx" reaction or if a herx reaction could be delayed to that extent, but at one point I felt as bad as I did at the beginning of the illness which I have not for a long time (have pretty much learned to live with it and avoid the triggers like exercise).

That by the way is one thing I don't understand about Lyme, I know there is a lot of overlap with ME symptoms but my understanding was that PEM was the "cardinal feature" of ME and fairly unique to it, PEM has been the main issue since day one for me and I have not heard this symptom mentioned in the context of Lyme much at all.

As far as Prof. De Meirleir, I am very happy with his care. If you accept that he is extremely busy and that you will have to wait at least 3 months for your initial test results and his report analyzing your situation, you are fine. I schedule phone consults periodically for consultations and this works well. Also, on the occasions where I have needed his input urgently, I received a reply to my email in one or two days.

That is good to know, thanks.

 

[Sushi]

...
That by the way is one thing I don't understand about Lyme, I know there is a lot of overlap with ME symptoms but my understanding was that PEM was the "cardinal feature" of ME and fairly unique to it, PEM has been the main issue since day one for me and I have not heard this symptom mentioned in the context of Lyme much at all.

For those of us who are positive for Borrelia and/or co-infections, the disease process does seem to be very much intertwined. No one yet seems to know the answer to the "chicken or the egg" question in regard to ME and Lyme, but, yes, PEM is there for most all of us.

For me it has been much reduced by treatment though. I have only been treating Bartonella for a few months but PEM had been reduced by other treatments prescribed by KDM earlier.

Sushi

 

[justy]

Hi Vitalic, your results are similar to mine - I had 111 on the infectolab test and my cd57 is just at the lowest range of normal. KDM diagnosed me with Lyme because he felt he could see the footprint of the disease by looking at all my tests. He can also see that I have neurological inflammation which fits better with lyme than the other 2 infections I have - bartonella and Chlamydia pneumonia.

It looks like you also have low titres for Bartonella - same result as mine - and you mention cats so this could also be important.

I am still waiting for treatment plan and have not started treatment yet, but my preference would be iv abx in Brussels, rather than the more drawn out oral route - but we will see.

All the best
Justy.

 

[Vitalic]

Thanks Justy, that is interesting indeed, quite comforting to know there is someone in a somewhat similar position. Although it does remind me of the question posed by someone in an article/post I read here a while back, namely does anyone come away from KDM not diagnosed with Lyme? I too would opt for the IV route because I guess like everyone else I am impatient to have a life back again, but at the same time it is a big call and there is so much controversy around Lyme.

I don't feel like I have enough of a grasp on it yet to know for myself what the facts are about the disease, or more specifically "Chronic Lyme Disease". If you have Lyme and have never been treated for it does that count as Chronic Lyme or is it just untreated Lyme disease? It's funny because I'm relatively well versed in all the minute details of ME/CFS but always more or less ignored reading about Lyme whenever it cropped up in the context of ME/CFS.

Presumably once you initiate treatment KDM would be monitoring it as you go? So you could see if the treatment was having an effect if not in terms of symptomology at least in terms of the data. Have you had any input on the treatment plan or expressed your preference for the IV option, or is it something that only he can decide based on the individual.

 

[Sushi]

@Vitalic

I haven't been diagnosed with Lyme.

Yes, he monitors you as you go--he'll indicate when to have a followup appointment and what tests you need to monitor your treatment.

After he proposes a treatment, you discuss it and it and he will answer your questions and modify it if you have concerns.

Sushi

 

[Vitalic]

Thanks, well I think he sounds like a good person to start with, we certainly don't have the funds to be jetting out to the US right now.

Wish I could see him earlier though, earliest appointment I could get is late September. I'm also starting treatment for TMJD soon, I'm told I will need surgery to fix the jaw joint, which is spooky because I've heard a lot about that on this site and we also read that Borrelia has a tendency to attack the joints.

 

[Daffodil]

Elispot-LTT tests:

The LTT test reflects the actual, current Borrelia burgdorferi activity of chronic and also acute Lyme infections. The Elispot-LTT is highly sensitive and can detect even one single Borrelia-reactive T-cell in the blood. The Elispot-LTT is very helpful when monitoring a chronic or acute Lyme therapy, and should usually become negative about 6 to 8 weeks after completion of an effective therapy.

http://www.infectolab.de/index.php?id=51&L=1

 

[JT1024]

It seems like the "challenge" of having an antibiotic like doxycycline and then being tested helps those who have had Lyme for a long time.

My IGenex tests came back positive for Lyme, Babesia, and Anaplasmosis a year ago. I had an appointment with an LLMD who was trained by Dr. Horowitz but I had to cancel when my brother became very ill and died.

I will be seeing an LLMD next month... Hopefully I'll get some insight into what is going on.

When I had my IGenex testing, I didn't have the LTT test. I had the WB for the Lyme.

 

[justy]

KDM did ask me about my jaw, and I said it was fine - forgetting that in fact it clicks and sort of 'locks' if I try and open my mouth wide - it has been doing that since my late teens, which is when I imagined I may have picked up the Lyme - I am now 44.

I am not sure yet about KDM's treatment plan for me - we had a quick phone consult to discuss the results and the plan will come through soon - i understand that for UK patients he ususally recommends oral abx as he knows it is hard or impossible? to get IV's here. But i will ring the clinic and ask f i feel i would rather go to the clinic for 3 months for the iv treatment - i am still weighing it all up and have yet to see what he suggests.

Last week i had a nasty chest infection that has caused a serious relapse - luckily i spoke to KDM around the time and he felt very certain it was a flare of the Chlamydia pneumonia and said i needed specific antibiotics. My own GP said i had already had amoxy and my sputum sample was clear so would not give me any more antibitoics. I was unable to breathe for over a week and very distressed - sitting up to sleep, 2- 3 hours a night - yet my GP would do no more and gave me higher doses of steroids to counteract inflammation.

If i hadn't had KDM tell me what i needed and the positive CPN result i would not be on the mend from the infection as i am now - i managed to get an out of hours GP to be interested in my test result for CPN and he immediately agreed i should have another antibiotic targeted to that - it is only since then i have started to get better, although unfortunately the M.E is much worse (KDM said steroids not good for Lyme, plus i am on doxycycline for the Cpn which is also used to treat Lyme so perhaps herxing? i have been having severe internal tremors and weakness and much worsening in all ME symptoms, but until i am off all abx and steroids its hard to tell what is happening)

Sorry, going off topic, but trying to illustrate how KDM has already helped me with his knowledge of medicine and M.E - i am so grateful to be able to breathe normally again. Now the real fight begins, but not feeling up to it right now...

If you have apt with KDM for late sept you need to add on another 3 months from then before treatment plans etc are in place - it is a slow process but it keeps costs down and means he can see more patients - there are a lot of us who need help!

 

[Vitalic]

If you have apt with KDM for late sept you need to add on another 3 months from then before treatment plans etc are in place - it is a slow process but it keeps costs down and means he can see more patients - there are a lot of us who need help!

Yes I appreciate that. I am tempted to try going back to Breakspear again as well, I did hear somewhere that they have improved the way they handle Lyme cases so I would be interested to know if they would view my results any differently than they did ~3 years ago.

Interesting that KDM asks about the jaw, my condition is so bad that I think the TMJ symptoms are possibly worse than the ME symptoms at this stage, hence why I am going ahead with treatment for it, but it does beg the question of whether that is a good idea if the underlying condition is what is causing the joint problems, are you then treating the effect and not the root cause, either way I don't think there is much choice because it has got to the stage where I can barely open my mouth to talk on some days.

It seem like the "challenge" of having and antibiotic like doxycycline and then being tested helps those who have had Lyme for a long time.

My IGenex tests came back positive for Lyme, Babesia, and Anaplasmosis a year ago. I had an appointment with an LLMD who was trained by Dr. Horowitz but I had to cancel when my brother became very ill and died.

Sorry to hear that, at least you have had a positive on the WB which is a good starting point.

I hope that the course of antibiotics I took did lead to the positive in my case and it's not just a coincidence, I do wonder why the Lymphocyte level was too low in the first Infectolab test but not in the second given they were separated by only 4-5 weeks, was that just bad luck with the first sample I'm not sure.

 

[Valentijn]

I've had jaw discomfort on the left side for years, long before serious ME symptoms started. But the illness which "triggered" my ME exacerbated it badly on the left side, plus the right side was painful for a while as well. That was really annoying, because I can only crack the left side of my jaw to relieve the pressure, but for the life of me I couldn't get the right side to crack

Fortunately the flare-up and the right-sided discomfort just lasted a few weeks. Less fortunately, I then had ME

 

[xrunner]

Even so, the fact they did not encourage any kind of follow up or further investigation into the initial Lyme results has left us kind of annoyed, that really could have set my sister and I back years. I spent months thinking I might have a psychological problem, making trips to the hospital for CBT/GET, can't even get angry about it anymore.

I'm sorry to hear that. Unfortunately since the retirement of Dr D. that place has lost some depth and experience in the infectious disease dept., even so it is quite disappointing they didn't give you a diagnosis.
It was Dr D that first diagnosed me with Lyme but that was about five years ago. He knew all sorts of different abx protocols for Lyme and co-infections. It's a shame they haven't got anybody to replace him but that's not surprising.
If you decide to go back, I wouldn't see anybody apart from Dr M. Otherwise, I'd try KdM.
An advantage of seeing him would be that you would at the same time treat both Lyme (assuming such diagnosis) and treat immune suppression with Gcmaf. Best wishes.

 

[Vitalic]

Hey, just a brief update. Had a very interesting meeting with KDM, he believes I may have an undiscovered strain of Borrelia which may explain why I have weak positives on multiple sub-species.

Awaiting test results now, just wondering is it worth going over to Belgium to discuss results or better to do that over the phone and only go there to commence treatment?

Also in terms of research, I feel like I should understand more about all the different classes of antibiotics, what their purpose is or why they are introduced at the stage they are (in the context of Lyme). That task seems a bit daunting, I don't suppose there are any good resources for that or is it just a case of putting in the reading time?

Finally, KDM already suggested I start a course of b12 hydroxocobalamin but unsurprisingly my GP won't fulfill the prescription because "it is from a private doctor", any advice on what I can do in this situation would be good.

 

[Hanna]

You can buy hydroxocobalamin on the net.
One example on iHerbs
http://www.iherb.com/Advanced-Ortho...lc=en-US&w=hydroxocobalamin&rc=6&sr=null&ic=1

 

[Vitalic]

@Hanna I should have mentioned it's for intra-muscular shots (3x week for 2 months)

I thought of trying to get the GP to prescribe the B12 for fatigue, but even then I doubt it would be at the dosage/interval requested by KDM.