Can you have Lyme and still have high resistance to colds, etc.?

Question

I'm undiagnosed. I've had a couple of ELISA tests that were negative (not the C6), and I've tested negative for lupus, RA, etc. No lesions on a brain MRI. I have none of the tender spots seen with fibromyalgia.

Extreme fatigue, muscle pain, and joint pain for the past dozen years or so. Brain fog, balance issues, and cognitive difficulties that have gotten much worse over the past year. Loads of other symptoms as well, all consistent with Lyme.

I used to spend a LOT of time hiking, camping, and just generally outdoors. I was living in NJ when my symptoms first began.

I definitely want to ask my new doctor (haven't seen him yet) to take a closer look at Lyme. 

However, I'm really confused. Lyme suppresses the immune system, right? Is it possible to have it and still have a high resistance to illness (aside from symptoms)?

I shake off colds and flues quite easily - I almost NEVER get them, even when I've had to nurse loved ones through them.

Does this "super resistance" mean this can't be Lyme, and I've hit another dead end?

Lymebuster · Answer

Forgot to tell you...if you have had lyme for a long time you will most likely not test positive on a Western Blot so you can take doxycycline for about 10 days, 200 mg /day and then get tested...That should spur the body into making antibodies.

Lymebuster · Answer

Many lymies have low Vit D levels, Magnesium, Potassium, etc.  Borrelia causes hypercoaguability so the cells are not receiving nutrients.  Most bacteria need iron but Borrelia needs Manganese and does not seem to require Iron.  Also many lymies have a problem with gluten and do better on a gluten free diet.  Everyone agrees that sugar feeds the bacteria and LLMD's are divided as to whether you should use supplements to assist the body.  Some docs feel it feeds the bacteria and others feel it will support the immune system.  No one has the answers so you will just have to use trial and error to see how you feel..Research and try different things.  Many LLMD's want to use abx for long periods of time and others use them for short courses or pulse them..  The treatments are constantly evolving and there is no Lyme Guru Physician out there.Read all the time and see what works for you.

Lymebuster · Answer

Your immune system is on high alert and that is why you are not getting colds, etc.  My daughter who also has lyme got H1N1 and got over it quickly and is very ill with lyme.  I also do not catch the flu, colds, etc...The immune system is on overdrive....and most other lymies have noticed the same thing.  Also in some people you can develop auto-immune diseases especially Hashimoto's thyroiditis.

Trace420 · Answer

Thank you both so much!

skarey · Answer

I'm very resililant to colds/flus as well.  Hardly ever get sick which is strange being that I have two small children at home.  It's so werid how I can be SO miserable with lyme, but never have to worry about catching a cold.

I've heard this about many lyme patients.

Jena906 · Answer

In dec of 2006 for 6 weeks I was so ill and no one knew why. Only things low was vit d. ferritin (iron) level very low and thyroid (only tsh) was off.  I kept trying to find a dr who did not think I was crazy....  I noticed in my 2yr time before treatment 2007-2008 I never once got the flu or cold.  UNUSUAL due to I had 2 highschoolers and 1 college student at home.  Every time someone got sick they all did but me.  Even my Husband who NEVER got sick.  I thought this was strange since the dr's thought I had some sort of an atuo immune disorder..  
GOOD THOUGHT

Trace420 · Answer

Thanks! I'd actually thought of booking with the LLMD and was pretty on the fence about it. Now, I'm off the fence! I'll do it.

Thank you both soooo much!

wonko · Answer

I like JackieCalifornia's idea to work in parallel.  Often there is a wait to get into see an LLMD, especially since the initial appointment can be long (mine was over 3 hours) and then you may need more tests, which means, alas, more waiting.

It is refreshing to hear your comments on how ridiculous it is that Lyme patients are swept under the rug.  It is of course difficult for us, but it also causes such stigma around the disease that I think contributes to people in getting diagnosed late, or not at all.  We're pretty used to being black sheep, it is compassionate of you to make such a comment.  

I admit that for a long time, while I was aware of Lyme and knew there was some controversy surrounding it, I figured that since my ELISA was negative that I'd be nuts to give it further thought.  It took me about a year to turn around and look back at it as likely.  I thought my case was exceptional, to take over a year to dx and having seen so many doctors on the way.  But as I started to read Lyme patient testimonials, I quickly learned that I plenty of company, and if anything, I figured it out on the fast side!

There is not a lot of good, evidence-based science supporting chronic Lyme or the success of long-term antibiotic therapy.  And what evidence there is is countered by other studies.  All knowledge passes through stages, and as Einstein said, "If we knew what we were doing, it wouldn't be called research."  It is a difficult departure to seek out an LLMD, and it's a decision that does require the patient to act for themselves.  For me, I'm glad I did it.  While treatment has been long and difficult, I believe that I would be far worse off without it.

PS-"Cure Unknown" just came out in paperback for a low price, and you can read some sections of it online for free, or may even have it at your library.  The film is good too but I think the book is more essential and easier to access, as well.

JackieCalifornia · Answer

You might consider booking an appointment with the LLMD even while you are seeing the other new MD ... while that may seem like doubling up unnecessarily, getting diagnosed and treated asap is important --- so if you try the first MD and s/he doesn't work out, then you're back at square one with time lost. My motto: be aggressive.

Trace420 · Answer

Thank you! It's so reassuring to hear that this may not be a dead end.

And thank you for your suggestions as well - I have heard of the book and movie, but haven't been able to put my hands on them yet.

Before some sleuthing led me to think some of my symptoms might be related to Lyme, I had no idea there was even controversy surrounding it! Personal opinion interjected here, but I think it's really horrible that certain groups can completely discount patient experiences.

I made this appointment with the new doctor before I knew anything about the controversy (long waiting list). I don't think he's an LLMD. I DO have the name of an LLMD fairly close by who is also taking new patients, though. (Thank goodness!) 

And I HAVE had low vitamin D! Technically just "insufficient" and not "deficient," because my number was 23. One more clue...

Thank you so much for your encouragement and all the info.!!! I don't think I could bear to think I'd stumbled across an answer and then realize almost just as soon that I still had NO leads.

wonko · Answer

Sorry to hear of your frustrations.  Given your symptoms and history, I think you are wise to give Lyme a 2nd glance.  As you may know, some doctors are resistant to diagnosing difficult cases of Lyme.  To learn more about that, you may want to check out "Cure Unknown" by P. Weintraub and the documentary "Under Our Skin."  Both have informative websites easy to find with any internet search.

I'm not a doctor, just a patient dealing with this, and I also had a long road to diagnosis.  I don't know the official answer to your question about if resistance to cold/flu rules out Lyme.  My personal thought is that no, it does not.  I was strong as an ox before my illness got bad, and even if I did get sick it hardly slowed me down.  Oddly, once I began treatment for Lyme then I got colds back to back, but I can't say that there is any significance to that.

Lyme and co-infections (ticks often carry more than Lyme) can cause a wide range of presentation in patients.  Your situation of feeling very ill, yet having mostly normal tests, fits the experience of Lyme patients well, but of course only a good doctor can diagnose you and treat you.  

For me, by the time I got very sick, I had abnormal tests but all were non-specific, which is also consistent with the experience of many Lyme patients.  So I had MRI lesions but a clear LP, and a high SED rate and high c-reactive protein, but negative ANA and negative RA.  I also had a very low vitamin D (which some hypothesize is linked to chronic infection, but it's also a common deficiency) and some abnormal thyroid test results.  Individually, all of this was inconclusive but once I found an ILADS doctor I was able to get a dx and treatment.

If you do have Lyme, it is likely that you will only get it diagnosed and treated if you fight for it.  Getting the diagnosis and proper treatment is a real up hill battle, and one you should know about if you plan on pursuing the matter.  With late-stage Lyme disease, the burden is on the patient to navigate through the controversies about this disease within the medical community.  Another good resource in addition to the book and film is the ILADS website, at http://www.ilads.org/

Good luck and keep us posted.