Could i have lyme?

[BDJ808]

Hello everyone!
I would just like to thank you in advance for Reading my post. I am a 21 year old male who was once extremely active but my health has deteriorated over the past 5 years. I have been to over 25 doctor visits over the past 5 years but have been unable to find a direct cause for my symptoms. I can’t even count the amount of times I’ve had blood taken (>20 times). My symptoms started gradually and have now gotten to the point where it’s all I can do to get out of bed and make I through the day. Here is a list of my symptoms:
• Extreme fatigue and exhaustion. I don’t just mean that I am tired all the time but that I am fully exhausted. Even just walking down the street can seem like a feat at times.
• Muscle and joint pain. My muscles and joints are soar all the time. It feels as though I have arthritis although I have been tested for it and do not have it. My neck is probably my largest complaint as it is so soar that I have a constant headache.  If I do anything even slightly physical I will be even more sick and soar the following day.
• Jaw pain and stiffness
• My eyes do feel soar at times but this may be due to wearing contacts as my vision has decreased over the last few years. Before that I had perfect vision.
• At times i feel as though I have pressure in my ears.
• My head just feels really foggy as if its more difficult to think things through
• Loss of sex drive and I no longer feel as though I can get as full of an erection.
• I have an extreme sensitivity to alcohol that I never use to have. I don’t mean that I get drunk easy but I get hangovers very easy. Even from just having one drink it makes me feel worse the next day.
• I have a rash on my lower legs and forearms that’ seems to come and go. (Possibly Eczema)
• I periodically have blood at the end of my stools. Maybe once every few months or so but it is more blood than you would from just cleaning yourself to hard.  
• I have an increased sensitivity to motion sickness. Even just driving will make me feel light headed and woozy.
• I also tend to shake. My hands literally shake all the time. Although I feel I have had this since I was young it has gotten worse in recent years.
• My symptoms seemed to get much worse after taking minocycline antibiotics for acne and never really got better.
• Before I was chronically sick I spent about 10 days in the hospital with some extreme form of illness that had flu like symptoms including me fainting, puking and diarrhea. I did seem to make a full recovery from whatever caused this illness so I’m not sure if it is related or not.
• I have some minor digestive issues but nothing to bad. One thing I notice is that if I wake up and chug a glass of water I will have diarrhea about 30 minutes later. If I drink a glass of water later in the day after eating I will be fine.
• Seem to get sick from antibiotics

I have been tested for a lot of things and am running out of things it could be. I spent some time at the mayo clinic seeing various specialists and was diagnosed with fibromyalgia basically because they just couldn’t find anything wrong with me so I struggle with accepting the diagnosis. All tests and bloodwork seem to come back normal except a moderately elevated anti-histone and slightly elevated liver enzymes.  My testosterone is near the very bottom of the normal range which I feel is unusual for someone my age. I did also have a positive ANA panal at one time but it was just after I was taking the minocycline so that can cause a positive reading. I have had 2 negative readings since then. I thought it could possibly be due to drug induced lupus from the minocycline but according to specialists I would be feeling better by now if this was the case. I have been tested for lymes disease (negative) but still feel this may be a possibility although I do not live in a Lyme endemic area. I just sent blood to a lab in California called Igenex for further Lyme testing. I live in Western Canada. I even did a candida diet religiously to see if that would help but it didn’t.

My thoughts
I think it could possibly be chronic lyme as I have read about a lot of controversy in its testing and treatment. Some MDs believe in chronic lyme but most do not. I also think whatever is making me sick seems to react to antibiotics since I had a worsening of symptoms when taking the minocycline. I also feel that the elevated anti histone has something to do with it and possibly the slightly elevated liver enzymes’. I think there is an extremely low chance of colon cancer because of the blood in the stool and the elevated liver enzymes but this would be a long shot. I may request a colonoscopy as I have yet to have one done. I am very desperate and feel like the only thing I haven’t tried is a spinal tap to check for some form of virus or something. I am considering doing this operation.

If you have any suggestions on what it could be or tests I should have done that would be greatly appreciated. Even if it’s a long shot.

Thanks for reading!

[Ricobord]

Just to clarify.... To start treatment IF a good LLMD determines you do indeed have Lyme.  I am not a doctor and certainly cannot diagnose anyone, but you sound extremely similar to other stories of untreated Lyme.

[Ricobord]

Ditto the others.  You sound like a classic case of late stage Lyme Disease.  While Lyme alone could be causing your GI issues, you could also have a coinfection called Bartonella.  It is sometimes responsible for GI issues in Lyme patients.

Minocycline has both antiBartonella and antiLyme effects, so if it made you feel worse, it sounds like a Herxheimer reaction, or die off of the bacteria.  This is very common in Lyme patients.  We call it "herxing".  Not all patients feel herxing and not all meds cause herxing.  I've had my worst herxing on IV meds.  Oral meds haven't been very effective for me, but they are for the majority of patients.

The testing is really poor for late stage patients. Unfortunately, doctors are mostly beholden to these tests.  You need to find a good LLMD ASAP to start treatment.

[JackieCalifornia]

Well said, Murph.

BDJ808, I don't see you have noted where you are geographically, but if you tell us what city/state you are in or near, we might be able to suggest some Lyme-related organizations that could put you in touch with a good Lyme doc nearby.  We don't post Lyme docs names here, because the 'old guard' of docs who don't much believe in Lyme can be rather hostile to docs who do understand and can make things difficult for those helping us.  

Or you can search online at ILADS for a referral.  ILADS is short for International Lyme and Associated Diseases Society, made up of medical and scientific types who take Lyme and its co-infections seriously.  They have a website at ILADS.org.  

Within that website is an email to send a message to ILADS to ask for names of Lyme specialists near you.  If you can't find that link, let us know and someone will send it to you separately.

Another way:  search for something like this, inserting the name of your state if not Michigan:

         --  Lyme disease michigan --

Sorry for the overload, but take heart:  there are people out there who can help you figure out if you have Lyme or if not, what it might be.  

Let us know how we can help.  We've all been where you are, one way or another.

[Murphgolf]

You have a lot of symptoms. Lyme Disease? One way to find out is to find an LLMD. I went 12 years with doctors, basically, telling me I needed some mental help.

And standard doctors do not do the more sensitive tests for Lyme. I happen to find one, after many years, who understood Lyme Disease because she was part of the original Lyme Disease studies at Yale. I was very lucky.

I had been tested for everything in the book. I mean it. Lyme Disease came out positive when sent to a more sensitive lab. I felt better for a while on antibiotics, which told me that was the correct diagnosis.

Very few doctors understand the real problem and how to diagnosis and treat Lyme Disease. Again, not saying you seem to have it, but it couldn't hurt to find out for yourself.        

[JackieCalifornia]

oops, you can tell it's been a long day.  what I did was type the email address putting in ONLY some extra spaces, which need to be taken out before using the email address to send an email.  

that should end confusion about putting parts of the email address inside [brackets] and so on.  

I'm sure the mods will say if this is not acceptable.  thank you.

[JackieCalifornia]

Hey, it worked!  All you have to do then is take out all the spaces between the letters and symbols and squish it together like a regular email address.

[Mods, do let me know if this isn't okay.  Thanks.]

[JackieCalifornia]

Trying again ....


contact @ ILADS. org

[JackieCalifornia]

Well, I guess not!  Sorry.

[JackieCalifornia]

I've been reminded by the moderators that it is all right to post contact information without disguising it, so that this, which I posted above:

   -- contact [at] ILADS [dot] org --


should read like this, and give you a live link to click on:

            ***@****

[JackieCalifornia]

Welcome to MedHelp Lyme -- but I surely wish you didn't have reason to be here.

You give a good history -- lots of detail and specifics -- this will help future docs figure out what to consider and test for.

Lyme is an odd disease -- it affects everyone a bit differently, and sometimes VERY differently, which is partly what confuses the docs.

It's my vague understanding that the Canadian health system isn't all that up to date on Lyme disease (tho one might say the same about huge swaths of the the US medical community).  My first suggestion would be to get to a Lyme specialist for a review and opinion.  CanLyme is the Canadian Lyme group I am most familiar with, and they have a website.  As a first step, I would suggest you go there and get names of MDs in Canada who are listed with CanLyme.  

The difficulty with such groups/registries is that there is no test for an MD to join, and not all Lyme docs are created equal, so also doing some snooping on the internet for patient comments is sometimes helpful.  Also searching online for a particular doc's name to see what comments have been made can be useful.  

You might also seek referrals from the best known US Lyme association, ILADS (International Lyme and Associated Diseases Society).  There is no 'test' for a doc to join, so some of them are little ... odd, because Lyme is really the wild West of medicine.  

There are however many good and serious Lyme docs to be found, and tho we don't post their names here in public (to avoid the Lyme deniers the opportunity to complain to state and local medical boards about those docs as going against so-called 'mainstream medicine'), it is very doable to find an LLMD, tho you may need to travel.  Have to say, tho:  it's worth it.

I didn't see in your post what part of Canada you are in, but do tell the ILADS referral people what big city you are located in or near and how far you can travel.  The email address at ILADS for a referral is

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

If you are not doing so already, I would strongly suggest you collect and keep ALL your prior test results and make a summary history as you did above, for an LLMD to review so that s/he gets all the data possible.  If you don't already have copies of all tests and treatments (and not just about Lyme) relating to your condition, have a friend help you collect and assemble it.  I still have my own Lyme binder on the shelf -- just in case!

Whether you have Lyme or not is for a knowledgeable doc to say ... but with a mix of co-infections (separate diseases that the Lyme ticks often carry), the resulting symptoms can have a very wide range. I went through 20 MDs before one of them finally tested me for Lyme (I knew of Lyme, but had no clue that I had it), and when the test came back positive, the dear doc assured me gently, 'Oh, you could not possibly have Lyme' -- when in fact I did and also had another disease often carried by the same ticks.

I had an old friend who had had Lyme, so when I heard the magic word, I knew to go get a knowledgeable doc, and indeed I was treated for over a year with antibiotics and remain well some 7 or so years later now.

If you do not have Lyme, a Lyme doc may be able to give you some ideas of what else it might be, so it's imo a worthwhile effort to see one.  Lyme docs tend not to be blinded by medical orthodoxy, bless their hearts.

You might also post on this site again with a message titled 'Need LLMD near Calgary, Alberta' or wherever you are.  That will catch the eye of anyone browsing through here -- not everyone posts, but there are many Lyme patients, current and past, who come through.

Please let us know if we can help further, and especially let us know what you find out and how you do.  

Best wishes to you -- J.