lyme

[marg]

This site has helped my youngest daughter in the past. Now I need some information for another daughter ( who will write in on her own if there is a further need.)
In April she visited Italy and was bitten by two ticks in the Tuscany area, one on her scalp and one on her arm. The ticks were dead when they were removed about 2 days later. She had a small bull’s eye rash on her head, with a similar,smaller
rash beside it, no rash on her arm. After she got home ( a week later) her lymph nodes swelled but she did not have flu like symptoms. She went to a clinic immediately and was given a 10 day prescription of Doxy. Her doctor gave her another 10 days, so she had 20 days in total.
She has been symptom free since but wonders if she could have lyme and whether 20 days of Doxy was enough. She intends to have tests done by IgeneX which she will pay for out of pocket as we live in Canada.

1.We wonder if the fact that she has had a course of antibiotics would mean she should wait to do the testing.
2.We also don’t know what tests to ask for.
3.She is sure her GP will sign for the lab work, but her GP is not very knowledgeable about lyme. Finding an LLMD in the Toronto area doesn’t look too promising – if you have one listed we would appreciate the name in a PM.

We would both be grateful for any information from the great folks at Roadback.
marg

[marg]

I know how short- staffed RBF is, but I hope someone can help us with this. We just don’t know if it makes sense to get testing asap – or if the fact that she had 20 day Dozy in April/May, will affect results.
We think maybe she should start more Doxy right away – but then that could be bad for accurate test results.
Unfortunately, I only learned of all this in the last week as my daughter didn’t want to worry me and didn’t know about the possibility of nasty symptoms down the road.
Oh my…. hard when our kids try to spare us – but we could be helpful.
marg

[Trudi]

@marg wrote:

1.We wonder if the fact that she has had a course of antibiotics would mean she should wait to do the testing.

I was on antibiotics when I was tested. Was Igenex positive, not CDC.
Take care,
Trudi

Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?

[lynnie_sydney]

I know how short- staffed RBF is

Marg – RBF has no staff. We are all patients here, some of whom volunteer and no one has any medical training. This is a patient-generated Foundation and a peer-to-peer forum. Just thought I better make that clear, especially for newbies. That being said, there are people here with a great deal of accumulated wisdom both from experience and self-education. Maz is probably the one with the most Lyme knowledge. However there are others, including Parisa. You may want to PM anyone whose wisdom you’d especially like to hear on this.

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Maz]

@marg wrote:

She has been symptom free since but wonders if she could have lyme and whether 20 days of Doxy was enough. She intends to have tests done by IgeneX which she will pay for out of pocket as we live in Canada.

1.We wonder if the fact that she has had a course of antibiotics would mean she should wait to do the testing.
2.We also don’t know what tests to ask for.
3.She is sure her GP will sign for the lab work, but her GP is not very knowledgeable about lyme. Finding an LLMD in the Toronto area doesn’t look too promising – if you have one listed we would appreciate the name in a PM.

Marg, very sorry for overlooking making a reply to your post….one of those weeks. Please don’t hesitate to PM, if you ever need to wave a flag. 😉

The good news is that although your daughter contracted Lyme (bulls-eye=Lyme regardless of test results), she received early treatment and the good majority of folks who get prompt treatment do very well and don’t need further treatment. 😀

The potential downsides of Lyme are that ticks can pass more than Lyme and these tick-borne co-infections can prove troublesome if undiagnosed and untreated, there are cases where even prompt treatment isn’t enough, with so many borrelial strain variations it’s also impossible to know if someone has a weaker strain(s) or a more virulent strain, and depending upon the state of one’s health and genetic make-up, Lyme can be a bigger issue for some than others. One never gets rid of any infection they have during their life-time…there is always a piece of it left in the body, even if the acute infection has been treated successfully. So, one of the concerns with Lyme is that it can remain dormant in the body as a latent infection for years and re-occur later when immune function is compromised. There is a lot of debate about this, but patient experience here has borne this ‘theory’ out. This can then make diagnosis later in life much more tricky, for instance, if one develops RA later in life.

So, in answer to your questions, I can only offer suggestions, but you must do what you both feel most comfy doing.

1. The western blot test is an antibody test and, given that when one gets infected they will likely always carry a piece of that infection with them, there will be some antibody in the body whether the infection is active or not, though the antibody bands may wax and wane over time. This is why re-testing later isn’t really helpful…once a person has had Lyme, there is always the potential for re-occurrence. So, because the western blot is a measure of antibody (not a measure of the organism or its DNA itself, as with PCR), it doesn’t make a good deal of difference whether or not a person is on abx or not. The bigger question is how immune-suppressed Lyme has made a person, because it is a very immune-suppressive infection and this is one means by which it can persist. Some of the sickest patients won’t test positive, just because they aren’t producing enough of a counter attack in the shape of antibodies to actually test. Thing is, your daughter had a bulls-eye rash, so she has Lyme, whatever any test says. So, the bigger question is whether you want to spend the money anyway. Did your daughter manage to take a pic of her rash? This is better evidence than a test, which is variable at best.

2. Testing is costly, so most people begin with the basic western blot – test #s 188 and 189. By putting in a call to the lab, they will mail you a testing kit with all the necessary packing materials for the blood sample, the requisite paper work needed and a return mailer. This basic test comes in two parts (IgM and IgG) and costs around $200. Here’s the rub…you know your daughter already has Lyme – she has had a bulls-eye rash confirmed by her doc and received early treatment – so the bigger question may be, does she have any tick-borne co-infections that might need to be addressed,too? Co-infection testing is pretty unreliable, so it needs a good LLMD to do a clinical assessment of symptoms. If a person doesn’t have symptoms or blood counts indicative of a co-infection, then there isn’t really any point in spending the money on an expensive co-infection panel, as there is no need to treat someone who isn’t exhibiting symptoms. If your daughter was getting unusual headaches, night sweats, tingling, muscle twitches, or any of the myriad other symptoms listed for Lyme and co-infections, then it might be better just to spend the money going to see an experienced LLMD who would know how to treat. Ideally, it’s symptoms that need to be treated with tick-borne infections, not labs, though labs can support a diagnosis if positive. If you call IGeneX labs and decide to run Lyme and co-infection tests, let them know where your daughter was bitten in Italy and they should be able to tell you which co-infections are more likely to be found in those locations and if they have capability to test for these and Euro strains. They may even suggest your daughter would be better off getting a German tickborne infections panel run.

3. As far as we know, there are no LLMDs in Canada (one in Ottawa who is booked out by 2 years) and most Canadians are coming over the border to upstate NY to see a lady LLMD in Chazy, NY. She had chronic Lyme, herself, and is from Montreal but practices just over the border. If you’d like this doc’s contact info, I’d be happy to send it to you. Others still will come all the way down to NYC to see one of the better-known LLMDs. ILADs is holding its annual conference in Toronto at the end of October, so we’re hoping this conference will attract Canadian physicians who are open to ILADs physician training.

http://www.ilads.org/lyme_programs/lyme_events.html

We just don’t know if it makes sense to get testing asap – or if the fact that she had 20 day Dozy in April/May, will affect results.

No, the abx in April/May shouldn’t affect results, but it’s something you might like to confirm with IGeneX if you decide to get these tests run and when calling for them to mail you their testing kit. Again, though, a bulls-eye is enough evidence to prove a person has Lyme and regardless of what any test says, it’s a definitive clinical sign for Lyme. If your daughter currently has no symptoms and feels healthy, then she may be just fine. If, however, she begins to experience symptoms/signs of persistent infection, then she will know to get herself to a LLMD asap for a full work-up and tick-borne infections assessment.

Hope something here helps in your decision, Marg. I had two bulls-eye rashes and years prior had classic Lyme symptoms that I didn’t recognize as such that eventually exploded into RA. I was ignorant of the consequences of untreated Lyme and did not think to seek treatment after my first known tick-bite and followed conventional wisdom to just wait to see if I developed symptoms. As the first bite was on my scalp, I never would have seen a possible rash, anyway. My LLMD gave me the option to have IGeneX labs run and I opted for it, even though he said that with bulls-eyes it wasn’t really necessary. I only tested positive on two significant bands, which was an IGeneX positive but CDC negative. I guess I needed some proof I had Lyme, even then, but now realize that my rashes were enough evidence to support a diagnosis. The bigger problem with Lyme, as you will understand and know, is that conventional medicine just doesn’t recognize a chronic form of Lyme. As your daughter received 3 weeks of doxy, she would be proclaimed “cured” even if she does develop late Lyme symptoms, which they dub, “post-Lyme syndrome,” and most of these are considered to be some type of psychosomatic sequalae or “autoimmune” disease.

All the best in your decision-making process with your lovely daughter, Marg. 🙂

[marg]

Trudi, thanks for letting us know you tested positive in spite of ABX. We really needed to know about that
.
Lynnie, I should have said “moderators”, my bad! I know the moderators are very busy and I appreciate your answer.

Maz, I REALLY APPRECIATE your information and views on this. VERY helpful.My duaghter unfortunately did not take pictures but her GP did see the small and smaller Bull’s Eye rash on her scalp.

Good advice to use $$ for an LLMD. Please send me a PM with the names of the LLMD’s in New York.

And yes, here in Southern ONT. we do have a small group pushing the Government to get Public Health to do more regarding lyme. We will give them our support. Hopefully doctors will attend this conference.

We are so grateful for your time and knowledge , Maz. Many thanks.
marg

[Maz]

@marg wrote:

Good advice to use $$ for an LLMD. Please send me a PM with the names of the LLMD’s in New York.

Marg, my pleasure. 🙂 Will send you a PM with the LLMD list for NY state. Wishing your daughter well and good on her for getting treatment right away when she got home from her trip. I’m with you – really hoping more Canadian docs will get with the program!

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