Jump to content

Lyme disease?


Recommended Posts

So I was surfing a bit, and decided to check if it was possible to get a general blood test done (figured it would be nice to know if I was deficient in anything), and came across a website that does just that. Anyway, they had some different tests available, and one of them was a Lyme test (note that those are quite unreliable though).

But then I did a little search on Lyme disease, and came across this:

 

Q: What are the symptoms of Lyme Disease? 

A: There are unlimited combinations of symtpoms and rarely can you find 2 people who have lyme with the same exact symptoms. Lyme can come on slowly over months or years or with a bang. Often patients report a "trigger" and suddenly or over time becoming sick. Triggers can vary from anything as simple as breathing paint or other everyday household chemicals to getting a vaccination or the most common, a cortisone injection. 

Lyme can lay dormant in your body for years going unnoticed. People are often misdiagnosed with Fibromyalgia, CFS, MS and many other illnesses, before finding out they really have Lyme disease. Lyme can cause mild symptoms, fatigue, headache, muscle aches all which may come and go and many countless other symptoms. Or lyme disease can cause more severe symptoms, severe and painful neuropathy (nerve pain) stabbing, burning, shooting pains, to mental illness. The bacteria can effect every bodily system from the brain to your feet.

note: The symptoms mentioned here are not all symptoms. I saw a list of 50 symptoms, but it's Dutch so no point posting.


They include spasms, tremors, anxiety, fear, depression, double vision, tunnel vision, blurry vision, light sensitivity, sound sensitivity, tinnitus, vertigo, mood shifts, "confusion: trouble holding on to the trail of thoughts", hypo/hyper/insomnia, "trouble with concentration, understanding new information, ability to understand what is read", problems with (short-term) memory, orientation problems (losing stuff, getting lost), "trouble speaking: finding words, saying incorrect words, stuttering, bad articulation/pronunciation."
Above are just the ones I found relevant.

So anyway, I was just wondering: perhaps aside from HPPD, the drug itself could've triggered dormant Lyme disease (who hasn't been bitten by ticks?), thus presenting such a wide array of (co-morbid) symptoms, or an exacerbation thereof.

Just a theory. Any thoughts on this?

Update: Apparantly DP/DR can also be a symptom of Lyme disease. Apparantly Lyme Encephalopathy is what those lingering symptoms are classified as. , any comment on this?

  • Upvote 1
Link to comment
Share on other sites

That is very interesting! I look forward to hearing further comment.

Aside; I did a blood test recently for the same reason as you. I was interested in doing a catecholamines test, but they seem expensive and I wonder what value I would get from it.. have you considered that?

Link to comment
Share on other sites

I consider the visuals and other stuff to be symptoms of a disorder - whether that be HPPD, persistent migraine aura, Lyme, or anything else. Symptoms can be caused by different things. For example, a cough may be as a result of a cold, or as a result of lung cancer. The same symptoms just a different cause. There are cases where those with Lyme have developed symptoms similar to ours.

 

Since my situation is not your typical HPPD case, I have been keeping an open mind. I do believe my symptoms are as a result of drugs, but I am open to other possibilities, since there are many with similar symptoms to us who have never taken drugs in their lives. In fact, my non visual symptoms match up more closely with Lyme disease than they do HPPD symptoms. Additionally, just before my first symptoms presented themselves, I did have some rashes on my legs. Not your typical Lyme 'bullseye' rash, but certainly not something that was normal. They were small and dark red, and lasted a few weeks.

 

In any case I got tested on the NHS (free heath care), and came back negative. However, the test which they use (ELISA) is not very accurate and is known to produce false results. I do not believe I have Lyme disease, but it is on my list to get tested for properly. Unfortunately private testing for Lyme here in the UK is very expensive. A company called IGeneX in the states do well respected tests and they can send you a kit which you send back with blood samples in for a reasonable price - but you still have to get someone to take the blood for you. My previous practice refused to do this since they said the NHS did not cover that sort of thing. I've not asked my new practice as I am pushing other things and cannot push too much at one time.

Link to comment
Share on other sites

zukov: hehe not me! However, I was talking to someone about tDCS, on thing led to another, and we ended up discussing other electrotherapies. Apparently, electrotherapy (transdermal I believe) has shown to be equally, if not more, effective than Penicillin for antibiotical (am I just making up adjectives) purposes. I'll see if I can find some studies that support this claim later. Interestingly, there's a case report (saw this in a documentary) of a woman with PSAS (Persistent Sexual Arousal Syndrome) who found complete remission of symptoms with electroacupuncture, which lasted longer than a day, from a single session. PSAS is, by the way, an equally rare, frowned upon disorder as HPPD, one could say.


Syntheso: I saw the catecholamine test available as well, but also wondered what value I'd get from them. Then there's the fact that I would probably be in an anxious state whilst they tap my blood, so I doubt the test would be accurate. Blood plasma levels of catecholamines don't directly visualize the transmission in cortical regions, so again; very ambiguous. What did you get tested for, if I might ask? Any incongruities?

Ghormeh: I agree, there are different "levels" that can be identified. There are symptoms, neurological/cortical functioning, and then the core reason for the alterations. The latter could be vastly different for anyone I suppose.
Did your rashes look anything like these?:

Lymerash.jpg

(from wiki)

Sadly medical care is not what it could be, and you're undoubtedly going to spend some cash on diagnosis/treatment. Good to know the ELISA test is not very accurate, as this is the same test provided by the company I would get checked with. However they also offer Immunoblot testing, if there's a positive IgG result (one of the antibodies I think). I suppose I could request to do Immunoblot testing regardless of IgG values. Price is €79 when tested concurrently with standard test, €99 when tested alone. I think that's fairly reasonable.

We also have a mail-order blood testing, where they send you a needle and everything. I suppose you could draw your own blood if you read up a little on the procedure. You'd just have to be, well, in a good headspace.

I intend to get tested for this in the near future. I'm just waiting to get on Keppra before doing anything else significant.

Link to comment
Share on other sites

There is not a single Lyme test that is 100% accurate, and so Lyme is a clinical diagnosis based on symptoms rather than something which is fully tested for. Tests are used to support a clinical diagnosis. I don't know about all the different tests but I do know the IGeneX package (around five hundred dollars if I remember correctly) is well respected because they combine a number of tests to give an accurate diagnosis as possible. From what I know it is the only one I would trust, although if you visited a Lyme forum you could get some better advice.

 

Yep, my rash looked something like that. I also saw that on Wiki a while ago. Only about 40% of people get the 'bullseye' rash I understand. However, here in the UK the guidelines state that 90% of people get this rash. The NHS is much criticised in relation to Lyme, hence the need to go private for accurate diagnosis. In the area which I live there have been cases of Lyme and so it is possible that I contracted it, even if unlikely. Unfortunately there is only so much money to go around, and I will be switching to part-time work soon, making such tests even less affordable. But if I can afford it at any point then it is on my list!

Link to comment
Share on other sites

Yes, Lyme does seem to have that diagnostic issue which could give it an ambiguous flavor.
500 dollars is indeed quite the substantial amount. Perhaps consider getting your Vitamin B (particularly B12) levels checked, as a deficiency thereof could produce symptoms that overlap with Lyme disease. Merely knowing that you consume sufficient Vitamin B is not an ultimate indicator of B levels (much less distribution) in the body, for metabolism deficiencies (which can be caused by Lyme... don't quote me on that though) could alter functionality thereof. The Vitamin B tests are significantly cheaper than Lyme tests.

And in the case of similar rashes and symptoms, indeed it would be wise to have another test. Sorry to hear of the financial limitations!
Indeed pushing for one thing at a time would raise your chances of getting anything done. Apparently in the US, preventative blood screening is very common.
Makes you wonder about the quality of healthcare in the EU, if you don't doubt that already.

Link to comment
Share on other sites

Honestly, you probably do not have lyme disease unless you are having musculoskeletal pain. Unless of course you live in europe. Lyme in europe is usually more of the neurological variety.

Sources: I have had lyme disease for 2 and a half years.

Link to comment
Share on other sites

I suppose, but many people travel abroad frequently.
In the Netherlands there hasn't been a single case of TBE in history.
However, I myself have been leeched by ticks in several different countries in different continents.
Apparantly there's a vaccin, other sources state GlaxoSmithKline discontinued the production. I'll have to sort that out.
Note that the vaccin was for TBE (Tick-Borne Encephalitis), and not for Lyme specifically.
Knowing that, I will definitely get a Lyme test. If they come back negative, I'll do my best to get a vaccin.
This solely for the reason that contracting (another form of, as some view HPPD as Toxic Encephalitis I believe) Encephalitis, or Meningitis, or both, with HPPD would probably make things a thousand fold worse.
For this reason, I would recommend to others to consider this.

bpl: Do you have TBE or the other flavor?

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.