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Possible Lyme for 3 months

Hi everyone,

I'm a 22yr old female and I'm awaiting the results of a Lyme test. I went to the Dordogne area of France in August and 3 days after returning started having episodes of fast heart rate (180-190bpm), as well as an odd array of symptoms including; fatigue, head pressure, aching legs, weight loss from 131 pounds down to 115 pounds (making me underweight for a 5ft 8 girl), dizziness, ringing ears, difficulty swallowing, and now some vomiting has been thrown in for good measure!

They checked out my heart – it all seems normal. The docs are being less than helpful so I've taken it upon myself to get tested for Lyme – and also get my thyroid checked out (normal TSH levels but my symptoms could also be explained by hyperthyroidism and haven't had T3/T4 levels checked).

I had something come up on my foot a couple of weeks after I got back from France (after the symptoms started), but I just assumed it was a spider bite.

My question is: I've read that Lyme can be really tricky to diagnose and treat. The general consensus of opinion is that the longer you have it, the more difficult it is to treat.

If this is the case, what are my chances of completely clearing up the Lyme if I've had it for 3 months (assuming I didn't have it before now)? I know it's quite hard to say, but is there anyone else that had Lyme for 3-4 months and managed to cure it with antibiotics? If so, how long were you on antibiotics for?

Thanks in advance, I appreciate any help!

Lara
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Avatar universal
Well, there's no set definition of what a Lyme specialist *is*, and your doc may believe and (in some or many regards) may be a Lyme specialist.  We as patients have become accustomed to the medical world speaking with one voice, and it is only in new and emerging illnesses that things get a bit messy.  

A few decades ago, AIDS was one of those illnesses that confused the medical world (I remember a doc, complete with long white coat) standing in front of a bank of microphones, telling the press with great certainty that one could not get AIDS unless you were gay or Haitian.  It was such an obviously stupid thing to say, but docs are only human and are accustomed to being fully on top of things and in control.  Lyme is just the latest little gift to humanity from the world of microbes.

Your MD is only acting on his trusted sources of information, but those trusted sources are staffed by ... people.  And people make mistakes, which is especially hard on the highly educated and generally expert medical personnel.  

Your MD may well be the top of the heap in the UK Lyme world, but in an new and emerging disease, it is sometimes the MDs further down the ladder who are more open-minded.  I would go online to explore the patient-oriented Lyme groups in the UK and see if you can find one who can recommend another MD specializing in Lyme.  Sometimes these MDs, who do not follow the pronouncements of the supposed experts, do not advertise themselves to avoid trouble with the medical 'establishment', but through patient-oriented groups, they can be found.

I just searched online for

          -- lyme disease patient support groups uk --

and found many leads.  These groups can be excellent sources to find a good Lyme doc. Your current MD may indeed be the best physician in the UK, but even if he is, getting a second opinion from another Lyme specialist is something I would do.  You do not need to tell 'Dr Best' that you are getting a second opinion, because you might need him in the future for reasons currently unknown.  If you do not already have copies of your lab tests already done, ask his office for copies 'for my file' or 'to show my family' or whatever works.  In the US, patients are entitled to their test results as a matter of law, but I don't know how it works in the UK.  Those tests could say much to your next MD that are not understood by your current MD.  (And I would keep my own copies of all test reports at home; never know when a new doc down the line might want to see them.)

About your white count being high, I can't say what that means.  Some people's immune systems are stronger than others, and that may be the case with you as well -- it's a good question for your new doc.  :)  

Lyme creates very complex interactions among the body's systems, and everyone is different -- that is partly why the MDs are so confused.  It takes a large sense of power and confidence to be an MD with so much power and responsibility for patients, but MDs are only human and sometimes get carried away.

Sorry not to be of more help, but you are asking all the right questions and taking responsibility for finding your way through all this, however much you may not have the energy to do so.  Ask a trusted family member to help you, if needed, and know that you are not alone in dealing with Lyme and that it can be beaten.  

Let us know how you do!  All good wishes --
Helpful - 0
Avatar universal
Thank you so much for your detailed reply!

I actually thought I was dealing with a Lyme specialist (he's meant to be the best in the UK), but now I'm not so sure based on the tests he used.

Over the last 4 months, when I've had to go to the hospital because of a fast heart rate, my white blood count has been high. Would this indicate that my immune system isn't suppressed?

Thanks again for taking your time to get back to me, I really appreciate it!
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Avatar universal
PS if you need help finding a Lyme specialist in the UK, let us know and we can try to come up with some sources for you to try.
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Avatar universal
I'm not medically trained, so my comments below are just from what I read (here and elsewhere) when I had Lyme and since then, as well as from my personal experience.

The scientific family name for 'Lyme' disease is Borrelia, and the sub-class of Borrelia that is specifically Lyme disease is Borrelia burgdorferi (B.burgdorferi for short).  

The 'Borrelia' tests you had are structured to look for your immune system's reaction to the presence of Lyme bacteria in your blood, but they do *not* look in your blood sample for the actual bacteria.  It is an indirect test, rather than a direct test.

The test can be useful ... but it can often also be highly inaccurate.  Why?  Because the Lyme bacteria have the ability to suppress your immune system, and when that happens, there are few or no markers to be found in your blood indicating that your immune system is reacting to the presence of Lyme bacteria, so it looks like you don't have Lyme, even if you really do have it.

          Bottom line:  you can have a serious case of Lyme disease, but your immune system can be prevented from both (1) killing the Lyme bacteria and (2) showing up as positive on the ELISA and Western blot tests.  It's a survival technique the bacteria have developed over the millennia, and it works quite well for them.  

Therefore negative test results may be entirely wrong, because your immune system is often suppressed by the Lyme bacteria.  Sometimes a very strong immune system can keep making antibodies to kill the Lyme bacteria, but it can also trail off to little or nothing after a while.  Everyone is different, but that's pretty much the trend over time for everyone infected with Lyme.  (My doc was impressed that my immune system was still up and fighting by the time I found my way to his office nearly a year after I was infected -- he said most patients who had had Lyme as long as I did would have few or no antibodies against Lyme at all, and thus negative tests.  Everybody is different, and you need a doc who understands that.)

The overall problem is that so-called mainstream medicine often doesn't understand that immune suppression activity by Lyme bacteria occurs and is significant, so the ELISA and Western blot tests commonly used to detect Lyme infections (by measuring the immune system's reaction to the presence of Lyme) are still relied on by most (non-LLMD) docs as totally accurate.  Those are the tests you were apparently given.  

This is the long way to say that you got the standard, non-LLMD tests for Lyme, but they can be wrong.  Some people with Lyme show positive on those tests, but as time goes on since initial infection, the immune system reaction fades away and the ELISA/W.blot tests become less and less accurate in someone who actually has a real case of Lyme.

I was on my 20th MD, still looking for a diagnosis for my illness, when out of desperation Doc #20 ordered the ELISA/W.blot tests, because she couldn't think of anything else to do.  The test came back positive, which it could well not have, given how long I had been ill (since the body gives up making antibodies to Lyme after a while).  An old friend of mine back East had had Lyme years ago, so I knew having Lyme was serious, and I took the positive Lyme test result and found a Lyme specialist right away.  I was tested further, diagnosed with Lyme and babesiosis (similar to malaria but sometimes carried by the 'Lyme' ticks), then treated and cured of both over about a year (first the 'babs' and then the Lyme -- they need different meds and treating them at the same time is too hard on the body).

I already had recent W.blot/ELISA test results, so my Lyme doc tested me through IGeneX labs, which uses a different (and more accurate) approach:  the IGeneX tests looked for DNA from Lyme bacteria (that is, Lyme genetic material in my blood) rather than at my immune system reaction as the ELISA/W.blot tests did.  The IGeneX test is highly accurate, but nonLLMDs tend not to use it, thinking instead that ELISA/W.blot is just fine, thank-you-very-much.

In your situation, I would get copies of all your test results (if you don't have them already) and take a copy to a Lyme specialist for a second opinion.  The tests you have had already are useful IF they are positive, but are not particularly reliable if they are negative, as described above, but take them with you anyway.  A good LLMD likes to see data.   And ALWAYS keep your own hardcopy of all your test results -- getting them later can be a real hassle.  A big three-ring binder is your friend.

Whew.  It's late here, so some of this might be garbled -- if so, let me know and I'll clarify.  You're doing fine -- keep us posted!
Helpful - 0
Avatar universal

Hi again Jackie. Hope you're well.

I've just received my test results back (below), so looks like everything is negative. I'm assuming from the tests the lab ran both an ELISA and immunoblot? Am I safe to think that I don't have Lyme?

Thanks for your help.

Tick borne encephalitis virus IgG (IF): Negative

Rickettsia Results:
Spotted Fever Group IgM antibodies: Not detected
Spotted Fever Group IgG antibodies: Not detected
Epidemic Typhus Group IgM antibodies: Not detected
Epidemic Typhus Group IgG antibodies: Not detected

Anaplasma phagocytophilum Results:
Anaplasma phago. IgG (IF): Negative

Coxiella burnetii Results:
Coxiella phase 2 IgG (ELISA): Negative
Coxiella phase 2 IgM (ELISA): Negative

BORRELIA (LYME DISEASE) Results:
B.burgdorferi IgG/IgM (C6 EIA): Negative

Borrelia IgG Lineblot (virastripe):
IgG to Borrelia P83 antigen: Negative
IgG to Borrelia P58 antigen: Negative
IgG to Borrelia P43 antigen: Negative
IgG to Borrelia P39 antigen: Negative
IgG to Borrelia P30 antigen: Negative
IgG to Borrelia OspC antigen: Negative
IgG to Borrelia p21 antigen: Negative
IgG to Borrelia Osp17 antigen: Negative
IgG to Borrelia DBPA antigen: Negative
IgG to Borrelia P14 antigen: Negative
IgG to Borrelia VlsE antigen Borrelia: Negative
IgG Lineblot interpretation: Negative

Borrelia IgM Lineblot (virastripe):
IgM to Borrelia P41 antigen: Negative
IgM to Borrelia P39 antigen: Negative
IgM to Borrelia OspC antigen: Negative
IgM to Borrelia Osp17 antigen: Negative
IgM to Borrelia VlsE antigen: Negative
Borrelia IgM Lineblot interpretation: : Negative
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Avatar universal
Oh, excellent news that you have a solid MD!  That makes all the difference.  Just by luck, my LLMD was 15 minutes away from me, but his waiting room often had patients in for an appointment who had flown in from far, far away.  

There are patients who do not recover, but unless and until proven otherwise, I would assume that those docs either didn't run appropriate tests based on symptoms and history, or the meds were not the best selection, or some other human error.  Lyme is such a strange creature, and MDs are not quite accustomed to dealing with such wild new creatures.  

(All this confusion among the medical profession reminds me of the early years of AIDS -- it fit no known paradigm, and too many docs who are accustomed to 'cookbook' diagnosis and treatment were simply clueless.)

Let us know how you do -- we all have had different experiences, and that is a real boon to share among ourselves.  
Helpful - 0
Avatar universal
Hi Jackie,

Thank you so much for your helpful response.

Yep, I'm in the UK and luckily I've located the doctor that is considered the national expert of Lyme in the UK and is an ILADS physician. I drove a couple of hours to his clinic to have the blood tests (they said they'll also be testing me for a bunch of other infections), so hopefully if I do have Lyme disease I'll be in the right hands! I read up on Lyme disease when I realised it could be the cause of my symptoms and noted the importance of finding a good doc!

I'm so glad to hear you're still healthy after your treatment. I have read a few horror stories of people that never recover despite years and years of antibiotics and I was a little concerned!

Thanks again for all of that extra information. I feel much better having a better understanding about the type of treatment I would need if my results are positive. It's really kind of you to help other people on here who are a little in the dark with all of this – I really appreciate it!

Take care.
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Avatar universal
Thanks for getting back to me – much appreciated!
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Avatar universal
Welcome to MedHelp Lyme --

You are wise to follow up and be sure you are getting appropriate testing and treatment if you do have Lyme disease.  It appears that you are in England, yes?  I am not familiar with the approach UK physicians would take to Lyme, but it sounds from your comments as though it is similar to that of many US physicians/doctors/MDs.

If so, therein lies difficulty.  In the US, the MDs who would normally be expert in Lyme diagnosis and treatment (such as those who are members of the voluntary Infectious Disease Society of America [IDSA] and those who work for the US govt agency Centers for Disease Control [CDC]) have a less than effective and up-to-date view of how to diagnose and treat Lyme and the other infections often carried (perhaps half the time) by the same 'Lyme' ticks.  Received wisdom is, needless to say, not always current.

The IDSA/CDC view is that Lyme is rare, difficult to get, and easy to cure with a few weeks of doxycycline antibiotics.  If the UK physicians follow that same approach (as it sounds they may), then finding an ILADS physician is important, to test both for Lyme disease and for possible co-infections and then to know how best to treat any infections present.  The variety of infections the tick carry often need different antibiotics for each one.

In your situation, I would email to ILADS:

              --- contact    [at]     ILADS     [dot]     org ---

and tell them where you are located ("near Leeds, England") and ask for referrals.  If the first response does not work, email ILADS again and tell them the first name didn't work out (you might remind them of the name, if they do not have it at hand) and please send another.

Also look for patient groups in the UK who focus with Lyme disease -- they can be an excellent source of who the best MDs are.
----------------------------
The sooner you are diagnosed and begin treatment, the better.  It is possible to have Lyme and/or co-infections for an extended period of time (even years) and still be treated effectively.  As to your comment that the longer one is infected, then the cure is more difficult:  perhaps, but there is no barrier to timing.  I would always try treatment and aim for a cure.  What may be behind the stories that one cannot be cured except very very soon after initial infection may be due to inadequate understanding of Lyme's slow reproductive cycle mentioned above (necessitating longer treatment time) and that doxycycline is often inadequate except almost immediately after infection.  Because many of us do not know when we were bitten, this time line is virtually useless.  Thus I would go for aggressive treatment.

  --  "what are my chances of completely clearing up the Lyme if I've had it for 3 months (assuming I didn't have it before now)?"

Quite good, from what I read.  I had been ill for the better part of a year before finally getting a diagnosis and beginning treatment with antibiotics. I had not only Lyme, but also babesiosis, which is similar to malaria.  

  --  "I know it's quite hard to say, but is there anyone else that had Lyme for 3-4 months and managed to cure it with antibiotics? If so, how long were you on antibiotics for?"

I was on antibiotics first for the babesia, and when it was gone, treatment for Lyme began -- different antibiotics are often required for the co-infections that the Lyme ticks may carry.  Total length of treatment for me:  less than year.  The reason it takes longer than most bacterial infections is that Lyme bacteria have a very slow reproductive cycle, and it is when the cell wall is disrupted in reproducing that the antibiotics have the best opportunity to kill the bacteria.  In addition, the Lyme bacteria form biofilms in the body, slimy areas where the human immune system does not detect the presence of the bacteria.  Thus not only are antibiotics needs, but also meds to pierce the biofilms.  

The statement often seen in literature that those with Lyme require only a few weeks of antibiotics is true ONLY if the bite is seen and treatment is begun within a few days -- and that seldom happens for many of us.  The telltale circular ('bullseye') red rash that signifies Lyme is not always seen, for a variety of reasons -- sometimes it has already faded, sometimes it was on the scalp or back and not seen, etc.  Some MDs nevertheless insist that if there is no such rash, there is no Lyme infection.  I never saw a rash on myself or my family member who was also positive on the Lyme tests.

I was on only oral antibiotics, not intravenous (IV).  (IV is generally used only in long-established and difficult cases.)  If the tick is seen and dealt with almost immediately (within a few days of initial infection), treatment with doxycycline can (from what I read) be effective, but if the length of time the infection has been present is measured in months or not known (since many of us do not know when we were bitten), then the bacteria will have hidden themselves in protective biofilms within the body, thus requiring different meds and longer treatment (measured in months rather than a few weeks appropriate in a very early stage infection).  

I had had Lyme for at least a half a year before I was diagnosed, and likely longer:  never saw a tick or had a rash, so don't know for certain.  Oral antibiotics worked fine, and I am still healthy now some 7 or 8 years later.

The most important thing is to find an MD who understands that a few weeks of doxycycline is not adequate if there is any chance the infection is more than very very recent or if there are any co-infections not susceptible to doxycycline.  
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7983189 tn?1395976232
It sounds like you may have Bartonella and Lyme, or possibly just Bartonella. Both can be treated but not "cured", but to ensure treatment is proper

treatment, this should be done with an LLMD, who specialize in Tick-Borne Illness. Other docs may give you a short course of ABX if you test positive, but

that likely will not be enough to prevent recurrence, if you don't start them the day you pulled the tick off of you. I've had this for over 2 years, started

treatment about 8 months ago, and should be done with ABX in another 4 months. Its a lot to go through, but its worth it if you want your health back.
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