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New: Is it possible I've had Lyme for 10 years?

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Posted 7/11/2016 2:55 PM (GMT 0)
Hello, I live in the Czech Republic and have been suffering from non-existent (i.e., practically literally 0) libido for 4 years, and depression as well as low energy for 9 years.

I first saw a doctor for low libido 9 years ago, wondering if perhaps I had some hormonal issue or anything else. But she basically just ran a blood test and said everything was fine. So I attributed it to poor mood and dissatisfaction with job.

Then 7 or 8 years ago I went to the doctor to check me out again because I was really performing poorly in my work and generally suffering with tremendous tiredness all the time, as well as still also having depressive symptoms and ongoing poor libido. However, again the doctor said he did not have any suggestions for me, that my blood results looked fine, and that I must just be depressed.

Finally, 4 years ago I seemed to go effectively completely impotent. I could not have sex with a would-be new girlfriend because, although I could technically get erection fine, there was no drive behind it and I also did not have any sensation.

Today, I remain unable to have any sex and suffer with constant depression and anxiety. I thought it might be low Testosterone and my doctor has put me on TRT, but that hasn't worked either.

Can anyone tell me if it is possible I have had Lyme disease all this time? I found a tick embedded between my toes once 10 years ago. But I did not get any tell-tale signs of infection such as rash so I thought nothing of it.

Now I am desperate. My life is flying by, together with all my hopes and ambitions of starting a loving family. Any advise or direction anyone could provide would be greatly appreciated :-)
Posted 7/11/2016 3:10 PM (GMT 0)
vkg,

I am so sorry. You must feel so helpless.

Please go to our "New to Lyme-start here" the first thread in this forum. It has a lot of information in it that could help. Check out the symptom list to see if you have other symptoms you are not aware of.

Sex drive or lack of certainly is a symptom of Lyme as well as the exhaustion and the depression. And yes you could have Lyme for 10 years. Many of us have had it much longer than that. Also Lyme does not always present with a rash. I would suggest testing, if it is available in the Czech Republic. Also a Lyme Literate Medical Doctor. Not all doctors are familiar with Lyme.

Please keep asking questions and seeking an answer and don't settle for the pat answer, no its unlikely that it is Lyme. Most of us with confirmed Lyme have been told that in our journeys to wellness.

We are all happy to help, so let us know of any questions you have. The people here are very knowledgable and often know more than the Drs. from experience with a disease that is under studied and inadequately treated. Most of us have had no choice but to pursue the answers on our own!

If it is Lyme, please know that you can get reasonably better and to a point where you can live a normal life. It can be a long journey but with hard work and determination it is possible! I wish you the best.
Posted 7/11/2016 3:33 PM (GMT 0)
I wanted to welcome you and tell you that I agree with Denikeef's advice.

Testing for lyme should be your first action and I am very unfamiliar with the Czech Republic's testing.

Maybe someone else who reads this will know.
Posted 7/11/2016 3:45 PM (GMT 0)
Hi Vkg,
Welcome to our community! As the others have already said, it's possible that Lyme could be behind this, but without more testing, there's no way to know. You've had all of your hormones, your adrenals and your thyroid thoroughly tested? I would also encourage you to check out vascular issues as well. Bartonella (another tick-borne infection) can cause vascular issues as well.

Lyme doesn't always come with a rash - as a matter of fact, there are those that never have any kind of Lyme rash, I didn't. The most common symptoms associated with early Lyme is a feeling of the flu, and then it goes away as the bacteria go into a chronic infection state.

I would encourage you to take a look at an extensive Lyme symptom list (we have one in the "New to Lyme"? Start here!" thread titled "Master Symptom list") and see if you have more than just low libido, depression/anxiety (?).

Please do let us know what you think and if we can be of further help to you!
Posted 7/11/2016 4:35 PM (GMT 0)
Thanks for all the advice everyone. I only discovered Lyme as a possibility when I was reading today about people who have permanent depression and sexual dysfunction from taking Accutane (for the last few years, due to seemingly having eliminated every other possibility, I had resigned myself to the idea I my problems are probably from Accutane). Someone remarked that the symptoms are very similar to Lyme disease. Then I remembered the tick I once had. I have set an appointment with my family doctor for tomorrow, and hopefully then be redirected quickly to some Lyme specialist.

It's a little discouraging, however, to see that some of you have had this disease for ages and are still suffering from it. I would love to have the hope that I can just receive a treatment and then have eveything be behind me. It is not that easy, though, is it? Apparently, I may be looking at many months of treatment with only a partial recovery? Would you say the odds are great that some of these things may be permanent?

My symptoms have been zero libido and very low sensation in genitals, persistent anxiety with occasional panics, depression that is very bad without medication (I have found a medicine that helps a lot), and arthritis-like symptoms in my hip joints despite being only in my 30s.
Posted 7/11/2016 4:45 PM (GMT 0)
Ah, so you have been bitten by a tick. Borrelia and coinfections should definitely be explored and fully ruled out in your case (imo!). The infections can manifest in neuro-psych symptoms along with hormonal issues and throwing off the HPA axis. That said, please don't be discouraged if you end up having these infections. Some people have a harder time getting better, some can get well relatively quickly. It depends, but the key is that there are paths to wellness and recovery with these infections.

I'm not sure what the situation is like in the Czech Republic in regards to doctors, lyme, and finding a doctor who is lyme literate. You may have read that the atmosphere and proper care of lyme is a maze in many other countries. So there is a strong chance your family doctor might not be up to speed on these infections. And please be aware that the testing for borrelia and coinfections is not very good and leaves a lot to be desired.
Posted 7/11/2016 4:46 PM (GMT 0)
I surely wouldn't go so far as saying that any of your symptoms caused by Lyme will be permanent. No one knows what, if anything, they will be left with symptom wise. The best thing is to assume that at best, all the symptoms will resolve and stay that way with continued good care of the body, low stress levels and in general just keeping yourself very healthy, to being left with some minor issues.

I know how discouraging it is to see all of us still on here! But, remember, those that heal almost always stop posting and move on with their lives! So the Lyme forums are all filled with those that are only here for a short time while they heal, and those of us that can't seem to find the right treatments to alleviate enough of our symptoms - or, like me, who get reinfected.

From the tiny bit I just read about Accutane, detoxing will help you get past those side effects as well, and we do advocate for members to detox!! With Lyme, though, you do need to be careful to add things in slowly - no more than one new thing every 3 days or so, so that if it causes too strong of a reaction, you not only know what it was, but can stop it or reduce the amount right away.

Yes, unfortunately because you may have had this long term, you are looking at months of treatments most likely - but again, no one knows until you get there. Everyone is different.

Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf
Posted 7/11/2016 11:15 PM (GMT 0)
Thanks again for the advice. I'll look into the detoxing and read the PDF.

Let's say the doctor offers to provide me a test tomorrow. Are there any options I should particularly try to either insist upon or avoid? Similarly, does the fact I would be late stage now mean that some treatments she might be inclined to favor would in fact not be the correct option for me? Just want to be a little prepared for my appointment tomorrow.
Posted 7/11/2016 11:46 PM (GMT 0)
You could take a look at the ILADS Lyme Treatment Guidelines - by Dr. Burrascano.

You will see typical antibiotics used..and their dosages.

As you see, when treating lyme, the dose is often more than when prescribing for other infections.

www.lymenet.org/BurrGuide200810.pdf

Scroll down to page 18 for the antibiotic dosages.
Posted 7/12/2016 10:02 AM (GMT 0)
Two things:

(1) Can anyone recommend what common and/or widely available tests would be best for me given how long I would have had the disease? I have read the sticky but that remains unclear to me. I would hate to get a false negative or positive.

(2) I have seen things like this psychnews.psychiatryonline.org/doi/10.1176/pn.37.6.0032 that report Lyme probably being a cause of psychiatric disorder, with large percentages of populations in psychiatric treatment facilities showing anti-bodies for it. Can anyone tell me why or why not all the positive patients in such a study could not have just been given anti-biotics and been cured of their psychiatric problems? Had their problems become permanent?
Posted 7/12/2016 12:17 PM (GMT 0)
At this point, western blot is still the most trusted test. In the states IGeneX is the best. If your doc wants to do a test with a standard lab there be sure you ask for a mandatory western blot, even if the ELISA (or IFA) is negative. Hopefully you can also get in to see a LLMD.

If you are having trouble finding a doctor, you could try some herbs to see if they help. I'm sure you've seen on here many use Buhner protocol. I started with Japanese Knotweed Root for a few weeks and then added in Cat's Claw. Took a couple months to really notice how much better I was. The improvements are so small over time.

Best of luck. I pray you can get improvement soon so you can get on with living a full life!
Posted 7/12/2016 12:20 PM (GMT 0)
Also, a negative western blot is not necessarily negative. Post your results on here and people will help. At this point even one band can be significant.
Posted 7/12/2016 12:29 PM (GMT 0)
Did you take propecia/finasteride?
Posted 7/12/2016 5:26 PM (GMT 0)

vkg11 said...
Two things:

(1) Can anyone recommend what common and/or widely available tests would be best for me given how long I would have had the disease? I have read the sticky but that remains unclear to me. I would hate to get a false negative or positive.

(2) I have seen things like this psychnews.psychiatryonline.org/doi/10.1176/pn.37.6.0032 that report Lyme probably being a cause of psychiatric disorder, with large percentages of populations in psychiatric treatment facilities showing anti-bodies for it. Can anyone tell me why or why not all the positive patients in such a study could not have just been given anti-biotics and been cured of their psychiatric problems? Had their problems become permanent?

(1)The Western Blot and if you can get it, a urine test looking for DNA would be good. With the Western Blot, you get to see what "bands" are positive or IND - any of those that are on Lyme specific bands means you definitely have Lyme. But, there aren't many with long standing chronic Lyme that will test positive due to the bacteria's ability to inhibit the immune function. I had to have a full year of abx treatment before I tested positive.

(2)Why weren't they given the abx to treat these infections? Because most likely they felt that 90 days of treatment should have "cured" them - but those of us that are in treatment or have taken the time to read and learn, know that long term treatments mean a LOT longer than 90 days. Some people won't even herx until month 3 or 4. It's just another documented situation where the politics of this disease gets in the way of helping and healing people.
Posted 7/12/2016 8:57 PM (GMT 0)

gfields said...
Did you take propecia/finasteride?

I took Isotretinoin/Accutane 10 years ago. Why do you ask? I am very scared that my condition is result of the Accutane! But also crossing my fingers and making sure to evaluate every other possibility as well.
Posted 7/12/2016 9:00 PM (GMT 0)
Some people use the Armin Labs - in Germany.

Here's a link:

www.arminlabs.com/en

I don't know much about it, but there are some Dr.'s here (Canada) who use it with success.
Posted 7/13/2016 6:16 AM (GMT 0)
I am not familiar with Isotretinoin. I was just mentioning it, because I used to think I had a propecia-related disease called Post Finasteride Syndrome. I spent a year of my life researching it, only to find out that I had lyme disease.
Posted 7/13/2016 9:35 AM (GMT 0)

gfields said...
I am not familiar with Isotretinoin. I was just mentioning it, because I used to think I had a propecia-related disease called Post Finasteride Syndrome. I spent a year of my life researching it, only to find out that I had lyme disease.

This is what I am hoping will happen with me! My doctor has scheduled a test for Lyme in two weeks. Can you tell me how your recovery has been from the PFS-like symptoms? PFS/Accutane effects apparently have no cure -- what a nightmare.
Posted 7/13/2016 12:11 PM (GMT 0)
I saw my family doctor and am scheduled to get blood and urine tests in two weeks. She said that if I am positive, they will run another test as well. If all the testing indicates positive for Lyme, then she will put me on two weeks of oral antibiotics.

Does that sound about right?

I ask because the Burr Guide on Lyme (the PDF linked above in thread) seems to indicate that if one has been infected for more than a year (like me) they should do a longer duration of antibiotics in order to be sure to get the bacteria in at least one growth phase (with bacteria having 4 week phase cycle).

I am a little concerned that the treatment might not be adequate to get rid of the Lyme. Partially because she also said that testing afterwards would still show me as positive even if I was negative.

I would greatly appreciate hearing any reactions that people might have.
Posted 7/13/2016 3:48 PM (GMT 0)
No, two weeks of abx won't even cover a full replication cycle of the Lyme bacteria. The Lyme bacteria replicate in the body every 4 - 6 weeks. Even for a brand new infection with only a bulls eye rash and no symptoms needs to have 6 weeks of oral abx.

And no, if you don't have the Lyme bacteria, the test will not become positive after two weeks of abx necessarily - I had to have a full year of abx treatment before I got a fully CDC positive test. Lyme reduces the immune function so the body can't produce the antibodies necessary for a positive test, so it all depends on when your immune function is back up high enough to produce antibodies as to when you will be able to get a positive tests.

You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
www.lymenet.org/BurrGuide200810.pdf

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​You can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​


ILADS has their own referral system as well:
ilads.org/ilads_media/physician-referral/

And a new resourcewww.LymeDoc.org


​
Posted 7/13/2016 4:10 PM (GMT 0)
The recommendation by Girlie for Armin Labs is a good one, that is supposed to be a very good laboratory for borrelia testing. If you test negative on the tests your doctor is having you take I would not take that as confirmation that you are negative for borrelia/coinfections. Also, treatment needs to go until you are symptom free, and then 2-3 months (can't remember which) continuing treatment after all symptoms have cleared.

Also the coinfections are very important and prevalent in Europe. I wouldn't discount coinfections, but most doctors have no clue or understandings on how to diagnose or treat for bartonella, babesia, etc.
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