Suggestions Please?

[lavenderlover]

My Lyme Target was found and treated on Oct 19th 2012. I had one dose of IV Rocephin in the ER, was on Doxy and Keflex by mouth for one week, but could not tolerate it. Then I was on Zithromax and Ceftin by mouth for another 3 weeks. I thought I would feel so much better off the meds. When the meds stopped I got headaches and aches again. Now I am on Amoxicillin 500 mg, 3x day for another 30 days. My bloodwork came back highly positive for Lyme at the end of the Zithromax and Ceftin???? Why?? What can I do to make sure I get this devil out of my body????

[mojogal]

Lyme and its co-infections take sometimes years to get rid of. You must not be seeing a Lyme specialist or LLMD, Lyme literate Dr.
You should go to ILADS dot org and read things there plus email them for a doctor in your area.
Mainstream doctors just don't get it.

[JackieCalifornia]

(part 1 of message)

Welcome to MedHelp --

Sorry to hear you are having such a rough time.  I don't know what a 'Lyme Target' is -- are you referring to the circular 'bullseye'-shaped rash that some people get after a tick bite?  

Every doctor is a bit different in how they treat Lyme and what meds they use and in what combination.  What does your doc say about your continued symptoms?

If the doc says you have been fully treated and should be well, and that your continuing symptoms do not indicate a continuing infection, then I would ask what the symptoms indicate, if not Lyme?

If the doc has no answer or says you have 'post-Lyme syndrome', then I would find a new Lyme specialist right away.

(--continued in next message -- the system is locking up and won't take a longer message--)

[JackieCalifornia]

(part 2 of message)

I'm not medically trained, but my understanding is that if a Lyme infection is caught right away after the tick bite, then it can often be cured by a relatively short treatment course of antibiotics.  It sound like your doc did that, which is good news.

But if your symptoms are not gone, then it means the infection is still active, to my understanding.  If your doc refuses to treat further, then I would quickly find a new doc.  You do not need to tell your current doc you are seeing another doc for a second opinion, just in case you need to go see the first one again later.  (Docs shouldn't be so touchy about things like that, but they are sometimes.)

There are two possibilities I can think of:

1 -- You may have co-infections, meaning other diseases separate from Lyme that the same ticks carry about half the time.  These other diseases (like bartonella, babesiosis, ehrlichiosis, and some others) need separate testing and often different antibiotics from Lyme -- they just don't respond to the same meds as Lyme.  An experienced Lyme doc knows from taking a careful history from you of you symptoms what other things to test for.

(continued in next message)

[JackieCalifornia]

(part 3 of message)

2 -- You may, without knowing it, have previously been infected with Lyme (and/or some of the co-infections), as in a year or more ago, and simply didn't know it.  Sometimes the immune system is able to hold an infection in check and keep the symptoms down to nothing or to simple things like tiredness that area easy to blame on overwork or stress etc.  Then if you get another tick bite, the immune system can be overwhelmed, since it was already busy corralling the old infection, and suddenly you get worse and a short, quick treatment that may work for a new, not-entrenched Lyme+ infection doesn't work for all that your immune system is dealing with.  It's like a kindergarten teacher who can handle 20 rowdy kids, but if the class size suddenly doubles to 40, things are gonna get out of hand.

(continued in next message)

[JackieCalifornia]

(part 4 of message)

It sounds like the treatment you were given is intended for a recent, single, uncomplicated infection, but it didn't work.  So the question is, why didn't it work, what infections do you still have, and what treatment to take now?  

If your doc tells you you are cured because you got a few weeks of (x,y,z) meds, and any symptoms you have remaining are you immune system overreacting to a now-dead infection, say thank you, and GET COPIES OF ALL YOUR TESTS DONE BY THAT DOC (the doc's front desk will give them to you, and say that you copies of ALL the tests for your records, not just the most recent ones).

Then take the test copies (keeping a set for yourself -- you may need them in the future for a new doc to look into the past) to a new Lyme specialist -- and don't wait.  You sound like you feel lousy enough to be very motivated, and that' s good -- but only from the point of view of being motivated.  I've been where you are, and understand how confusing and painful it all is, to be messed up physically and knowing things aren't right, but not having treatment or guidance that fixes things.

If you need help finding a new Lyme specialist, let us know, and we might able to suggest someone.  I see you are in Rhode Island, yes?  There are also resources online to help find a new doc.

Take care, let us know how we can help -- we've been where you are.  

--end--

[lavenderlover]

Hi Jackie, Thanks for you info. I am so unsettled at this point. There has been no mention of co-infections from my primary doc.. I do feel a bit better on the amoxicillin but totally not myself. At least I don't have the headache, diarrhea that I did with the others. I continue with fatigue and jitters.  I am considering an infectious disease doc. In fact my primary mentioned this to me. She would not be offended. I walked today to try and strengthen myself. I so want to feel like myself again. Yes I do live in RI. Everything you said to me makes total sense. Thank you....How are you feeling. Plus how long ago was your infection.

[JackieCalifornia]

I wrote you a long reply, but the MedHelp system is not being kind these days, and it didn't post.  I'll do two short messages and hope for they post.

Infectious disease (ID) doctors are often those in the medical field most opposed to the idea that Lyme is a serious illness that takes some effort to get rid of.  There are some exceptions to this rule of thumb, I am sure, but may be hard to find.  I hope this ID doc is one of those exceptions, and it would make your primary care doc happy that you have followed protocol.  I would go see the ID doc, see what happens, and then regroup from there.  Please feel free to come back here and let us know what happens, and we'll be glad to share our experiences.

[JackieCalifornia]

... and part 2:  I feel great!  I had some pretty bad times for a while about 4-5 years ago, but once I got to the right doc and was diagnosed and treated properly, I got better and better.  It took less than a year of treatment, first for the co-infection I had, and then for the Lyme.  Everyone is different, however, and every doc does things differently.  The trick is finding a doc who is wise and understanding, and who knows that there are still things in medicine that are being discovered.

[mojogal]

Jackie is one of the lucky ones.

I have friends who have different co-infections and have been in treatment for years. It depends because everyone is different.

You should be aware.

[lavenderlover]

Thank you for your replies. My husband and I are researching infectious disease MD's. I think it is the right thing to do since all this has been going on since Oct 19th. It is scary and difficult to deal with. I am sure both of you know this much better than I do at this point. I would happy to hear any suggestions since I want to feel like my old self again. Thanks so much for your thoughts and concerns.

[JackieCalifornia]

(part 1 of 2)

We're glad to help, having been where you are.  Sorry if I repeat a bit below ....

You may get lucky with the infectious disease (ID) doc, but if he shrugs and gives you two weeks of antibiotics, don't be surprised.  ID docs and rheumatologists are often the docs most resistant to understanding that Lyme is not the sniffles.

If that is the reaction you get -- that it's no big deal, a little doxy will fix you right up -- then take a copy of the test results, say thank you, and find a Lyme specialist.

This is all different from all other encounters I have ever had with the medical world, and I have docs among my family and close friends, so I'm not anti-MD at all.  Just anti-thick-headed MDs with knee-jerk reactions.

Lyme is a 'through the looking glass', Alice in Wonderland kind of place.  
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If you need to find an LLMD, email to

                contact [at] ILADS [dot] org

and tell them where you are where you can travel to.
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[see next message below]

[JackieCalifornia]

(part 2 of 2)

Also, contact the Columbia U Lyme disease research center in NYC and see if they can see you or refer you.  It's an excellent facility, I just don't know if they take self-referrals from patients.
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I also see that Rhode Island Hospital in Providence has a Lyme disease clinic, and there are some other interesting 'hits' in a search I just did for

                          lyme disease rhode island
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Sometimes hospitals take the CDC approach to Lyme of "it's no big deal, here's 2 weeks of antibiotics, have a nice life" and show you the door.  So I don't know what orientation RI Hospital has, but some online snooping or contacting a local Lyme group may tell you useful data.  

(I note however that the otherwise friendly-sounding RI Hospital website says:  "If needed, referrals to other subspecialists, such as neurologists and rheumatologists will be provided."  This is a bit concerning, because neuros and rheumies are some of the docs most resistant to an aggressive approach toward Lyme, but the only way to find out is to contact them and walk down the path with them a bit and see where they go.  Then you can ditch them if they are not aggressive enough and go to the next option.)

Let us know how you do, okay?
[end]

[mojogal]

Ditto what Jackie said about infectious disease docs, they simply don't understand Lyme and think only a few weeks of meds will work.
Most of us have been through many different doctors, misdiagnosed etc. We don't want to have that happen to you.
Good luck. Keep us posted.

[Ricobord]

My PA said that often when they have a patient like yourself whose early treatment failed, they find that the patient has Babesia.  It is one of the most common coinfections of Lyme and is spreading rapidly, especially in the northeast. Somehow, Babesia interferes with the treatment for Lyme.  One theory is that it blocks the antibiotics.

Babesia is a parasite, a relative of malaria. It is treated with the same meds as Malaria. Antibiotics do not treat it. Unfortunately, testing isn't very helpful.   Most docs have never heard of it, let alone know how to diagnose or treat it.  Unfortunately, Infectious Disease docs are most likely to dismiss it, but you might get lucky and find one who is familiar with it.

A good LLMD knows how to look for it and can make a clinical diagnosis if necessary.

Other tick borne diseases that come along with Lyme can also cause some of the same symptoms. While you have taken multiple antibiotics so far, it is possible they weren't the right ones for a coinfection.

If you don't get well seeing an ID doc, then go find a good LLMD.

[JackieCalifornia]

That would explain why my Lyme doc treated babesia first, and then treated the Lyme afterward.  The 'babs' treatment was straightforward and no problems, and I felt a ton better afterward, then onward to the Lyme treatment.

[lavenderlover]

Hello Friends.

Thank you for that good info. I have to call my primary in the morning to request a referral. I will ask for a LLMD. I know some infection is going on. My strength is so much less than ususal. Plus I get many palpatations and tingles in hands. This will be week 6. When I get an appt. I will have my notes and questions ready. I truly appreciate your support. Thanks, and I will keep you informed!

[lavenderlover]

Hi friends. I kept a copy of origianl bloodwork. standard CBC w diff, Bmp, Lipid Panel, TSH, Free T4, Vit D, Lyme Tier IGM, IGM with Western Blot, C-reactive protien, ESR, Folate, Ehrlichia IGG andIGM AB, Babesia IGG and ICM AB were done around Oct 22, another Western Blot was done last week. I was told the second Western Blot came back highly positive. Hopefully I will have more answers this week. Thanks so much for sharing.

[lavenderlover]

Today my labs were faxed to a Lyme clinic in this state. Wish I knew more about what the reactive bands mean. I have 34 bands in Blot IGG. An infectious disease MD will review everything including Dr. notes and then contact me. I have been on Amoxicillin for a week now with not much progress. I also keep taking daily probiotics and yogurt. Oral thrush is nasty and I don't want it again. My plan is to keep at this thing until it is over. I continue to network with anyone who will listen. This is week 6. By the way.....How hard was it for you to go outside and enjoy nature again??? I know I will never be the same..............

[JackieCalifornia]

(part 1)

That's good news.  

A cautionary note:  If you see an infectious disease (ID) doc, don't be surprised if he's not interested in diagnosing you with Lyme or looking into whether the tick also gave you other infections that need separate testing and treatment from Lyme.  

There is a split in the medical community, and most ID docs hold firmly that Lyme is rare, hard to get and easy to cure with a couple of weeks of antibiotics, and that any continuing symptoms are your immune system simply overreacting to the now-gone infection.  ID docs are often not interested in testing for any co-infections, which are separate diseases the Lyme ticks carry about half the time.

This is the long-held view of the Infectious Disease Society of America (IDSA), the main voluntary group of docs who treat infectious diseases.  Unfortunately, due to internal politics, the IDSA position on Lyme is that it is hard to get and easy to cure with a couple weeks of antibiotics, and any symptoms remaining after that are not a continuing infection.

(see next part below)

[JackieCalifornia]

(part 2)

(part 2)

A positive Band 34 on a Western blot test means that your immune system has made antibodies to kill a particular protein found on the outside of Lyme bacteria, meaning that Lyme was indeed found.  An IDSA doc may or may not be willing to treat based on one positive band, and amoxicillin may or may not be effective; others here can speak to that.  

After six weeks, you are moving into territory where the Lyme bacteria may begin hiding in areas where the antibiotics can't reach them, and additional meds (sometimes called 'cyst busters') may be required to break open their hiding places (slimy shields called biofilms) so antibiotics can do the killing.

You can also ask for Diflucan, which is a strong antifungal drug your doc may be willing to prescribe for you to take care of an established yeast infection.  I have the sense from what I read (and have experienced myself) that there can be a low-level fungal infection hiding in the body that rises up again when antibiotics are given, because all the 'good' bacteria are wiped out by the antibiotics (along with the 'bad' Lyme bacteria), and the yeast moves in and takes over again.  

(see next part below)

[JackieCalifornia]

(part 3)

Yogurt should be taken at times away from the antibiotics (several hours away from the meds), because the antibiotics will kill the 'good' bacteria in the yogurt too.  And try to stay away from yogurt with sugar in it -- the sugar just feeds the yeast.

I'm not real happy when I'm around grass and trees and bushes either ... it's a natural reaction to having gotten slapped around by Lyme.  But hang in there -- you're headed in the right direction.

Let us know what the doc says -- we're happy to spout off our experienced by non-medical opinions.

(end)

[lavenderlover]

I was able to find a LLMD who I saw yesterday. He gave me two antibiotics and a specific way to take them. Fiber first, wait 10 minutes, antibiotics, then a full meal. He said two meds are needed because Lyme "Morphs" itself and can get away from the drugs. He also told me I was not on meds long enough and Amoxicillin is not a drug of choice. I am on Doxy and Omnicef. Supplements have to be taken also. So I am hopefully on the right track. The recipe to take them is a way to avoid all the GI symptoms. So far so good...He also told me about probiotics & yogurt. Wish I had met him first, but feel blessed to have met him after just 6 weeks :)

[mojogal]

Congrats. Very happy for you.

[lavenderlover]

Thanks so much. I am hoping to finally kill the beast !!!! Thank God I kept asking questions and reading as much as I could. The LLMD told me this is an epidemic. You have been very helpful and kind. Best of health to you always.