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Old 10-18-2008, 02:40 AM   #1
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Could this be Lyme?

I've posted this description on quite a few health boards, now. I was on another forum that deals with Brain/nervous system disorders and quite a few people saw my description and thought it might be Lyme.

I hope you guys can look over this and tell me what could be the "tell tale" signs of Lyme, if I have any. I don't think I have Lyme, but I do have something very annoying and odd going on with me, and it's been going on for 4 years now.

I was bitten by a "large" tick about 8 years ago now at a camping trip, but it was removed before the 36 hour mark. About 5 years ago I was bitten by someone's dog on the leg, and I was told by the carer that the dog "had all its shots". I went in and got a tetanus booster the next day.

In closing, I would ask that some of you be careful with suggesting Lyme, because I also have anxiety problems, and some of these could be caused by anxiety.


---------------------------------------------
I'm 27, male, with no diagnosed diseases. Recently I had a battery of blood work done (the usual, cholesterol, enzyme/vitamin levels, thyroid) and nothing abnormal was found. I have no history of neurological diseases in either side of my family. I do not have high blood pressure. I am very myopic however and I do have mild astigmatism.

About 3-4 years ago, after a prolonged episode of drug addiction, I experienced a feeling of "head pressure" that got steadily worse. That part may be important... it started off as tolerable, and over time, got worse and worse. It is now at an unbearable stage, and shows few signs of slowing down. It is almost a constant sensation--it can occur anywhere in or around my head, no preference for any side or area. It also extends into my neck (usually around the left side of my neck.)

Much more alarmingly, along with the head pressure getting worse, other symptoms have slowly appeared.. few, if any, going away. Whatever new symptom crops up, seems to stay. These symptoms include:

- Lots of floaters in the eye, which may appear out of nowhere and change on the fly--tolerable, but very annoying
- Daily tinnitus (mostly in the left ear, but occasionally "switches" to the right ear)
- Slight lessening of sensation on different areas of the body
- Visual problems, most noticeably (right now) is slight double vision, slight difficulty moving my eye muscles (seems to be tied in with head pressure)
- The double vision started 7-8 months ago, it just seems as if the "calibration" of my eyes is slightly off... hard to describe though.
- Stiffness/postural problems, makes for awkward walking, but no actual problems with mobility. Could be partially due to sitting in front of a computer too long, lack of proper exercise, etc.
- Stiff neck (could be from postural issues)
- Snapping jaw, like it's out of alignment (sometimes my jaw "tweaks to the left" involuntarily)
- My constipation (always a problem) is out of control
- Caffeine ingestion seems to cause occasional blurred vision and floaters, but not always.
- Alcohol intolerance. It makes most of my symptoms worse, especially the eye twitching/involuntary eye movement stuff--more than 3 drinks and I notice worsened symptoms the next day, even past the hangover stage

The head pressure was the first symptom of this "condition."

So, there are several aspects to this "thing" I have. I do have an anxiety disorder but low incidence of actual panic attacks.

So, is anyone familiar with the head pressure at least, and found a way to relieve it?
------------------------------------------------------------

Thanks,
Bill Zenith

Last edited by Benit; 10-18-2008 at 04:28 AM.

 
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Old 10-18-2008, 05:19 PM   #2
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Re: Could this be Lyme?

Hi welcome to the Lyme board!


I am getting my Lyme test back about next week, so even though I am not fully positive if I have it, the head pressure and the stiff neck, zero tolerance for alcohol, body stiffness are many of the symptoms I experience. My symptoms are very neurological at the moment as well.

All my regular tests are normal.

Do you live in a high risk State for Lyme? You can find a Lyme Literate Doctor or order a test kit from a company called IgeneX which I have and they have the best and most sophisticated test for Lyme.


I was tested by another Lyme lab yet its was not comprehensive enough.

Igenex test for other co-infections.

If you got bitten once that's enough to conclude that your symptoms can be Lyme or other co-infections that comes with a tick bite.

 
Old 10-18-2008, 05:47 PM   #3
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Re: Could this be Lyme?

Bill - IMO that's not a great symptom match for lyme, but lyme is a bizarre thing and impacts people in different ways.

Except for PCR, lyme tests have a very high false negative rate.

Ever had your vitamin D levels checked? Most people with lyme have a low vitamin D level (as measured by the standard test which looks only at 25D). That coupled with a high 1,25D (less often tested) can be an indicator of infection. Some say that combo is an indicator of Th1 disease (on which you can do a web search for more info).

 
Old 10-19-2008, 12:34 AM   #4
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Re: Could this be Lyme?

Quote:
Originally Posted by Nexis View Post
Hi welcome to the Lyme board!


I am getting my Lyme test back about next week, so even though I am not fully positive if I have it, the head pressure and the stiff neck, zero tolerance for alcohol, body stiffness are many of the symptoms I experience. My symptoms are very neurological at the moment as well.

All my regular tests are normal.

Do you live in a high risk State for Lyme? You can find a Lyme Literate Doctor or order a test kit from a company called IgeneX which I have and they have the best and most sophisticated test for Lyme.


I was tested by another Lyme lab yet its was not comprehensive enough.

Igenex test for other co-infections.

If you got bitten once that's enough to conclude that your symptoms can be Lyme or other co-infections that comes with a tick bite.
Thanks so much for your response!

I've not found many people who have the head pressure.

I'm not sure if I put this on here, but I do also have a stiff face sometimes, it seems to go along with the trouble moving my eyes.. everything just feels strained sort of, or more difficult than it should be. It's not like I can't do everything I normally do--I can--it's just a little bit harder.

Yes this thing is beginning to look very neurological in nature and it scares the hell out of me. Right now I have a bit of trouble coordinating my fingers on the keyboard. Usually I have no trouble, but today, a lot of symptoms got really bad.

I live in Pennsylvania, AFAIK it is a high risk state for Lyme.

Out of curiousity, are there any activities or dietary measures that make your neurological symptoms (esp. the head pressure) worse?

I have a particularly bizarre thing where after I have a bowel movement, my symptoms get *really* bad afterwards, and the worsening can last for 1-2 days afterwards.

 
Old 10-19-2008, 12:42 AM   #5
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Re: Could this be Lyme?

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Bill - IMO that's not a great symptom match for lyme, but lyme is a bizarre thing and impacts people in different ways.

Except for PCR, lyme tests have a very high false negative rate.

Ever had your vitamin D levels checked? Most people with lyme have a low vitamin D level (as measured by the standard test which looks only at 25D). That coupled with a high 1,25D (less often tested) can be an indicator of infection. Some say that combo is an indicator of Th1 disease (on which you can do a web search for more info).
Could a specific form of Vitamin D supplementation relieve symptoms, or even just produce a response, if you have Lyme?

I know that for people with B12 deficiency, daily use of sublingual B12 can eventually relieve symptoms (this is another condition I'm looking at).. is it possible that there's something one can safely do himself, just to gauge the response?

 
Old 10-19-2008, 06:37 AM   #6
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Re: Could this be Lyme?

Hi Bill welcome to the board.

Yes your symptoms "could" be lyme. most diffently. I at one point in my illness had the head pressure also. Many people from what I have read have head pressure. I don't have a lyme symptom list, but have you looked at the top of this board through the thread at the top where people talk of their symptoms? or have you looked up Lyme symptoms?

There are many bacteria's, virus's that can have many of the same syptoms.

Have you had a western blot test for lyme?

Hope you find your answers soon!


 
Old 10-19-2008, 06:42 AM   #7
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Re: Could this be Lyme?

Bill,

Some LLMD's (including those LLMDs from other countries) do have nutritional and exercise "prescriptions" for patients with lyme, in addition to medication treatments. This info is clearly spelled out in treatment guidelines but you will have to find it on your own due to the posting rules of this board.

From what I understand, some doctos require vitamin B, magnesium, and essential fatty acids supplementation. It couldn't hurt to do some reading about the role of vitamin b 12 in the treatment of lyme's.

I know that there are people who are adament about vitamin b and vitamin b12....but again, they are looking at symptoms....borrelia and vitamin b deficiencies go hand in hand so although a vitamin deficiency may occur, and supplementation may help to temporarily clear the neurological symptoms, supplementation doesn't address the borelia!! Again, it's important to address the CAUSE and not just treat the symptoms.

Lyme patients can predisposed to yeast infections so sugars, starches, simple carbs, and low fiber fruits, all of which "feed" the germs, should be avoided. Eating these things may cause an overgrowth of yeast in the intestinal tract causing gas, heartburn, pain, etc. Eating plain yogurt with active cultures is advised to balance the good and the bad bacteria.

I have also read that anything made from flour is not allowed...and I wonder if that ties in with the alcohol as alcohol is a product of grain.

There is a wealth of info out there.. this is just the tip of the iceberg.

Good luck!

Bethsheba

Last edited by bethsheba; 10-19-2008 at 09:22 AM.

 
Old 10-19-2008, 09:10 AM   #8
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Re: Could this be Lyme?

Bill - In Th1 disease, the infection produces extra 1,25D as a survival tactic. The 1,25D reduces the effectiveness of our immune system, hence the bugs are better able to evade it. Dietary vitamin D is a steroid precursor, and steroids are well known to damp down immune response (hence their use after organ transplants). Steroids may make you feel better temporarily since many symptoms are caused via inflammatory immune response, but they also allow the infection to grow worse. Since we want our immune system working a full strength to kill off the infection, steroids and vitamin D are contraindicated.

This vitamin D connection is why many lyme patients experience sensitivity to light... vitamin D being the "sunshine vitamin" and all.

 
Old 10-19-2008, 09:19 AM   #9
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Re: Could this be Lyme?

Quote:
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Bill - ...This vitamin D connection is why many lyme patients experience sensitivity to light... vitamin D being the "sunshine vitamin" and all.
Thanks!! Up until now I have not seen an explanation for this.

 
Old 10-19-2008, 10:39 AM   #10
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Re: Could this be Lyme?

Quote:
Originally Posted by dzguy View Post
Bill - In Th1 disease, the infection produces extra 1,25D as a survival tactic. The 1,25D reduces the effectiveness of our immune system, hence the bugs are better able to evade it. Dietary vitamin D is a steroid precursor, and steroids are well known to damp down immune response (hence their use after organ transplants). Steroids may make you feel better temporarily since many symptoms are caused via inflammatory immune response, but they also allow the infection to grow worse. Since we want our immune system working a full strength to kill off the infection, steroids and vitamin D are contraindicated.

This vitamin D connection is why many lyme patients experience sensitivity to light... vitamin D being the "sunshine vitamin" and all.
I'm trying to understand what you're saying.. that low levels of Vitamin D cause the sun sensitivity? Or Th1 disease causes an overabundance in the system and this causes sun sensitivity? Could you please clarify? Thanks

I am sensitive to sunlight myself.. especially in the warmer months. I get severe headaches, my eyes hurt.. it's horrible.

 
Old 10-19-2008, 03:00 PM   #11
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Re: Could this be Lyme?

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I am sensitive to sunlight myself.. especially in the warmer months. I get severe headaches, my eyes hurt.. it's horrible.
I had those same symptoms unitl I got my vitamin D levels down. It's the infection causing the sensitivity.

In a Th1 disease like lyme or sarcoidosis, an infectious agent converts vitamin 25D into the biologically useable 1,25D form. A healthy person's kidneys do this conversion on demand to meet the use needs of the body, no more, no less. In an infected person, the bacteria also do this conversion, but they do it without the normal checks and balances. The bacteria consume 25D and produce 1,25D.

The most common D blood test measures only 25D. When their results come back low, people are logically tempted to supplement D, but doing so only provides more for the bacteria to convert to 1,25D. It's like adding fuel to a fire. With the bacteria rapidly consuming the 25D, it's very difficult to get the body's level up, and meanwhile the person's 1,25D level is pushed higher and higher. One common symptom of excess 1,25D is headache.

The most common dietary form of vitamin D is D3. Your skin also makes D3 from light exposure. Your body converts D3 into 25D. As I described, 25D is converted into into 1,25D.

I used to get a headache after light exposure. As a test, I tried supplementing 1,25D directly (rx only) and, sure enough, I got the same kind of headache.

Healthy people need not worry about testing more than 25D. But if lyme is suspected, it is important to check 1,25D also. My 25D was low, and my 1,25D sky high. Such skewed results have very few causes, lymphoma is one, and a Th1 disease like lyme is another.

 
Old 10-19-2008, 04:06 PM   #12
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Re: Could this be Lyme?

DZ,

Is the info you are offering based on the Marshall Protocol? If so, the readers should know that because iThe Marshall Protocol does have its critics...that's not to say it wouldn't work.....

 
Old 10-19-2008, 06:55 PM   #13
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Re: Could this be Lyme?

It's primarily my personal experiences and study. The MP is one of many treatments that involve long term abx. Each treatment has its own variation on that theme. To my knowledge none has yet proven superior, but hopefully one will before long.

 
Old 10-20-2008, 04:17 AM   #14
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Re: Could this be Lyme?

Quote:
Originally Posted by dzguy View Post
It's primarily my personal experiences and study. The MP is one of many treatments that involve long term abx. Each treatment has its own variation on that theme. To my knowledge none has yet proven superior, but hopefully one will before long.
My doc treated me with a variant of the MP, in that he used the Benicar/Minocycline routine (had to stop the Minocycline and start Cefzil because of a possible drug reaction to the Mino), but he supplemented me with Vit-D because my 25 levels were very low (1.25 levels were normal). He also added Tindamax to kill the cyst form.

 
Old 10-20-2008, 05:22 AM   #15
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Re: Could this be Lyme?

From reading from different boards, for lyme or for Chlamydia Pnumoniae I havn't heard anything really good about the Marshall Protocol.

But then were all different and what works for one doesn't always work for another....

Good luck to you dzguy!


 
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