Neuro Lyme flare up?

[Richard36140]

Hi,
    I am 99% sure I caught neuro lyme towards fall 2009, (dead nymph deer tick found attached 07/2009) my symptoms started 09/2009 and were textbook neuro lyme. MRI's show spine and brain lesions and uk neurologist agreed with my request for ab's. IV and oral were taken for 7 weeks, Strong herx after 2-3days. No test has been positive in uk or France for Lyme or any other CNS disease, diagnosed with probable MS in France after not very good Q'clinical questioning by neurologist.
Symptoms improved considerably after ab's but mild cognitive and l'hermittes remained; recently got stressed after doing a lot,got over tired and stopped a few suppliments for brain, caught head cold and got flare up of cognitive and l'hermittes symptoms like MS does during cold.

My question is:
Do neuro Lyme patients get a similar flare up of symptoms post antibiotics with a cold or am I more likely to have relapsed after insufficient treatment?
Thanks    Richard

[JackieCalifornia]

Greetings ... welcome to the Lyme corner.

About the medicinal effects of garlic, I have read the same thing and am generally disposed toward garlic as having good effects against various ailments.  There are quite a few people posting in this site who take herbs and supplements in addition to or instead of antibiotics, but I've not heard of megadoses of fresh garlic.  That actually sounds a bit scary!

Here's something I just found on a website about garlic's health benefits, named  logically enough garlic-central [dot] com:  "Raw garlic is very strong, so eating too much could produce problems, for example irritation of or even damage to the digestive tract. ... There are a few people who are allergic to garlic. Symptoms of garlic allergy include skin rash, temperature and headaches. Also, garlic could potentially disrupt anti-coagulants, so it's best avoided before surgery. ..."

I have also read elsewhere about the anticoagulant effects.  So ... I would take garlic in food for its taste and overall medicinal effects, but I'd hesitate to knock back 15 cloves!  Whoa!  Too strong for me, I think, but everyone is different.  You must have a strong constitution.

There was a while last year or so that I was putting raw garlic in empty gelative capsules, 2 capsules twice a day, to combat a systemic fungal infection, and it didn't seem to bother me, tho, now that I think about it.

Herxes are worse for some people than others ... mine have never been as bad as the initial onset of the illness itself, and I usually don't realize I'm Herxing until it's almost over, but that may be a peculiarity of mine.  Hope yours aren't bad, either.

Good luck to you too -- let us know how it goes for you.

[lymepatient]

JackieCalifornia, can you take Garlic instead of antibiotics? They say fresh raw Garlic (non-irradiated) has antibiotic properties. I coincidentally ate about 15 cloves (with olives) and ended up with a terrible herxheimer (ended up in ER with temporary paralysis) which helped me diagnose my Lyme disease. Otherwise I did not know I had it despite the knee pain etc. After the herx, my knee pain went away. Then came back again. Now I am on antibiotics and having less herx again. Not sure if it will get bad once we reach the days of bacteria's growth cycle. I hope not. I had a rash in May 2010 that did not look like lyme and doctor did not give antibiotics. But now symptoms like joint pain, numbness, tingling, pins and needles all over the place fits the lyme and it flares with antibiotics. Good luck you all.

[JackieCalifornia]

It is often hard to tell what is causing the symptoms -- I personally never had bad Herxes, although everyone is very different in how their bodies handle the die-off of bacteria.  

I have not been fully treated with antibiotics (because of a reaction to some meds a while ago), so I still have symptoms from Lyme and/or a coinfection, but for now I take some herbals that help a great deal.

You could send an email to ILADS to ask about a French translation of Burrascano's Guidelines; I am not aware of any, but there may be one out there somewhere.

Out of curiosity, I just googled 'lyme france' and found the following on just the first page of search results.  (My personal favorite is the link titled "Britain warned over French chipmunks carrying Lyme disease" -- the Anglo-French wars continue.)

==================================================
1.   France Lyme, Association de lutte contre les Maladies Vectorielles ...
       - [ Translate this page ]
      Association française pour la Maladie de Lyme, Association française de lutte contre les maladies vectorielles à tiques, Maladie de Lyme.
      Forum des membres de France Lyme - Symptômes - Vidéos
      www.francelyme.fr/ - Cached - Similar
      
2.   Lyme Disease: Epidemiologic Features in France.
      BACKGROUND: Little is known about the epidemiologic patterns of Lyme borreliosis in France, where no mandatory notification system is available for its ...
      gateway.nlm.nih.gov/MeetingAbstracts/102269519.html - Cached - Similar
  
3.   Lyme disease in France: a primary care-based prospective study.
      by L Letrilliart - 2005 - Cited by 13 - Related articles
      To estimate the incidence of Lyme borreliosis in France, describe its ...
      www.ncbi.nlm.nih.gov/pubmed/16181516 - Similar
      Show more results from nih.gov
...
5.   Epidemiology of lyme disease in France: Lyme borreliosis in the ...
      by F Christiann - 1996 - Cited by 14 - Related articles
      on the situation regarding Lyme borreliosis in France, the information gathered in these past six years has enabled us to recognize the endemic nature of ...
      www.springerlink.com/index/QN1M423771080TH6.pdf

6.   Lyme borreliosis in central France: A sero-epidemiologic ...
      by F Christiann - 1997 - Cited by 7 - Related articles
      Epidemiology of Lyme disease in France – Lyme bor- reliosis in the region of ...
      www.springerlink.com/index/W08006522747KVH3.pdf

7.   Britain warned over French chipmunks carrying Lyme disease - Telegraph
      Jul 23, 2009 ... Wildlife experts in France have warned British tourists not to take home chipmunks to keep as pets as thousands are carrying the potentially ...
      www.telegraph.co.uk/.../france/.../Britain-warned-over-French-chipmunks-carrying-Lyme-disease.html - Similar - Add to iGoogle

8.   France, updated travel health information, Lyme disease ...
      Lyme Disease: Risk of transmission occurs throughout the country in wooded, brushy areas or in broadleaf (oak) forests. Risk is elevated in eastern France. ...
      www.travmed.com/guide/country.php?c=France - Cached - Similar
=====================================================

In searching "germany lyme disease" yesterday, I found a surprisingly large number of groups focussed on Lyme.  You may find the same in the additional search results for "lyme france" or something similar.

Best wishes -- let us know if we can help further --

[Richard36140]

Jackie,
thanks very much indeed for your input with this. I saw my GP on Friday who isn't especially Lyme literate but at my request - after listening to the recent symptoms we are going forward with my suggestion of high doseage oral minocycline and cholestryamine to break any recirculating neurotoxins out of my system (Burrascanos report 2008).
I wonder whether it is the re-circulation of neurotoxins that are causing the ongoing symptoms which have been magnified by the cold or whether it's cyst Lyme that has been activated by the cold virus.
Having looked carefully at Minocycline I note that wikipedia states that it has been used against MS in trials that showed some good results; it apparently acts as a good anti-inflammatory - so I may benefit even if it's MS by whatever cause (I am too old for MS at 50, I reckon ! :o) )

I will let you know whether I get a herx again, I think I am hoping for a herx...... but what I would prefer is the symptoms gone via the cholestyramine.

Many many thanks for your advice, my opinion is that untrained individuals often know far more than ilitLMD's. Here in France GP's dont seem to have access to US research due to the language barrier. Q Have you heard of a French translation of Dr Burrascanos last report (2008 16th edition) ? My GP is interested and I will try to track one down before I attempt to translate with google assistance.

Merci une mille fois
Richard

[JackieCalifornia]

Vets are aware of these diseases far more than human docs -- so if your vet friends says babesia is in your area, I would believe it.  I had babesiosis with my first (known) Lyme infection, and it was a bear.  Antimalarials are required to treat it, and it was an easy course of medication for me (azithromycin and atovaquone).  My LLMD treated my babesia first, and then turned to treat the Lyme.

About air hunger, it's not something I have had, I don't think, but was reading the other days about low thyroid being a possible cause air hunger, and Lyme is known to affect thyroid function.  Correlation does not mean causality, of course, but it's good you are noting the various symptoms for your doc's consideration.

I know nothing about MS, but I like Wonko's approach on deciding what to do -- it makes excellent sense.

Best wishes -- stay in touch with how you proceed --

[wonko]

I also have Lyme with neurological involvement as evidenced by MRI.  I have been treating for just under 2 years and am much improved, but can still suffer set backs and flares.

I can only speak from personal experience, but when my body is under any extra stress (such as from a common cold), my Lyme symptoms do flare.  It makes sense to me in that a cold will trigger an extra immune response, and so that will also affect any low lying chronic infections.

I've experienced a flare from a cold specifically, but also other events can trigger them, as well.  In my case, a deep tissue massage once sent me into a "flare" of sorts, during which my cognitive issues returned and I had obvious symptoms of high systemic inflammation.  Stress, travel, and extra work are all more difficult for me to juggle since my Lyme disease.  My heat intolerance has improved with treatment, but at times getting too hot could exacerbate my symptoms terribly to the extent that a hot shower once left me bed ridden for days.  

There is a lot of overlap between MS and Lyme symptoms, and some theorize that Lyme may even trigger MS (since the cause of MS is still not well understood).  While MS has a very different prognosis, Lyme can actually cause *more* symptoms than MS, because MS attacks the central nervous system while Lyme is systemic and can affect the nerves, skin, heart, joints, ...

Therefore, a "red flag" that Lyme is the culprit and not MS may be if you experience joint pain in addition to your neuro symptoms.  Also, Lyme can really irritate the peripheral nerves, and cause transient symptoms (like tingling and buzzing that can move around in your body).  In MS, lesions in specific locations cause symptoms in specific areas, so the tingling and other "paresthesias" experienced by MS patients will be in the same place (like a patch on your left leg, as opposed to up and down the whole leg).  Also, because of the asymmetry in newly formed lesions, MS symptoms rarely onset in a bilateral pattern.  For example, a sudden onset of tingling in both right and left hands is more suspicious for a systemic illness like Lyme than for MS.

(I was never diagnosed with MS, but it was the top of my differential diagnosis for a time due to the brain lesions, and at the onset of my illness I was in a top MS demographic [caucasian female near 30].  My Lyme tests were mostly all negative, too.  It took about a year and a lot of persistence to get treatment for Lyme, and even I was skeptical at first but I had such an obvious response to the antibiotics that I eventually became convinced.)

By the way, there is also an active MS forum on MedHelp, http://www.medhelp.org/forums/Multiple-Sclerosis/show/41

My opinion (note I have zero medical training!) is that if you experienced Herxheimer reactions followed by improvement from antibiotics, then I would pursue further Lyme treatment.  There is no cure for MS, only expensive and difficult disease modifying drugs that may or may not slow progression.  To my knowledge, there is no conflict between most MS treatments and Lyme treatment through antibiotics.

Sorry to carry on, and best of luck.

[Richard36140]

Jackie,
thanks for taking the time to write, it's very helpful. I didn't make the info clear, I had 30days ceftriaxone iv then 3 weeks or so of oral doxycycline. The bite was in 07/09 and the ab's started in 02/10. No ab's were taken for the recent cold.
I do agree that there are probably co-infections and that I may have been bitten more than once, the vet said babesia is prevalent locally and I got air hunger prior to the bite in 07/09 for no apparent reason.
I was spending my weektime in an office in the uk with a high Electromagnetic field (sleeping there in a campbed to - right next to all the computers) I have read lots of info on the risk to the blood brain barrier being compromised. Then weekends at home in France getting attacked by biting insects, ticks included.
I asked the question because I have read that MS sufferers get temporary flares during colds and I have still got a small worry that it's MS and not Lyme; I just wanted to see if it's a common problem with a cold for neuro Lyme sufferers(no pun intended).
Kind regards
Richard

[JackieCalifornia]

There are numerous different strains of Lyme, and I believe I have read that those in Europe are different from those in the US.  The symptoms of Lyme vary from person to person as well, so hard and fast answers are hard to come by.

Were you tested for co-infections?  Was the tick tested for which diseases it was carrying?  It's also possible you were bitten more than once, and got different diseases at different times ... which is unknowable at this point, but it means seeing an MD who can divine the subtle symptoms you may be having to lead to appropriate testing and diagnosis.

The tests in the US are not very accurate, and I would assume the tests in Europe/UK are similarly flawed.  Therefore diagnosis by an experienced MD, after taking a thorough history and ordering indicated tests, is so important.

Seven weeks of IV abx promptly after the bite is good -- it's more than most of us get.

That said, if you are still having symptoms, then perhaps more treatment is needed, but before that, testing for possible coinfections would be a consideration.  Coinfections sometimes require different meds than Lyme does.

So to your question:  "Do neuro Lyme patients get a similar flare up of symptoms post antibiotics with a cold or am I more likely to have relapsed after insufficient treatment?"

I'm NOT medically trained, but in your situation, I would think that yes, I may still have Lyme that was not fully treated, and in addition I may have undiagnosed and untreated coinfections.  The relapse you recount may be a Herx reaction, that is -- the antibiotics you took for the cold killed Lyme bacteria, which made you feel lousy because of the bacterial die-off.

Good luck, let us know how you do --