It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lyme Disease Message Board


Lyme Disease Board Index


Hi Everyone,

I have just found this board and could use your input on my situation, please.

My hubby and I feel that Lyme is the most likely diagnosis for my symptoms after having done considerable research on the topic.

I was bit by at least one deer tick this spring. I live in Northern MN and we are surrounded by woods and deer; deer are often in our yard. I found a deer tick attached to my thigh. I removed it with a tweezers. It was barely able to be seen, but we have a magnifying lens and we examined it under that and could see it was engorged, so had been on me for awhile. Around the same time, I found another deer tick that was engorged and had either dropped off my cat or myself, on the bed.

I watched for any signs of a rash at the bite site and none developed. It wasn't until months later, when I developed more symptoms, that I mentioned the tick bite to my hubby again and he informed me that one did not have to have the rash to be infected. Since I have multiple health problems, my symptoms could have been related to other causes and we did not make the connection until I brought the tick bite up again a few months’ later.

The symptom when the light bulb went on was when I woke up one morning and could not bend 3 fingers on both hands, but half way. I went from no joint problems to chronic joint problems over night (started a little over 2 months ago). I researched arthritis and found that rheumatoid arthritis acts like this. It can come on slowly or suddenly and usually affects both sides of the body at the same time, like mine did. SO, I suspected RA or Lyme or both. I was having joint problems in most joints, but the hands are the worst - quite bad.

I have read that lyme 'usually' affects the larger joints, such as the knees and not usually the smaller joints of the hands. Then I read that was not true, it can affect the hands too. I imagine there are exceptions to almost anything. My ring finger on one hand is very bad and getting worse. It is at its worst when I wake up in the morning and in the beginning it would get better throughout the day and then start all over the next morning. Now it does not clear up much during the day. My hands are so cumbersome and stiff! The ring finger pops in the joint in the hand, to be able to move it and is quite painful at times, especially after I force it to bend and then open it again. It also gets hot. The fingers on either side of it are getting worse and nearing the same severity. The pinkie on the other hand is the worst, but the next two are affected also.

Unfortunately, I didn't think to write down the date I found the ticks, but I did save them in separate baggies and labeled where they were found. My hubby and I think it was in April or early May that I removed the tick from my right thigh. I didn't know if the ticks might be able to be tested, but then as I read about the disease, it sounded like that might not be too useful, as it can only tell you if the tick carries the bacteria, but of course, not if you contracted it. It also sounded like the tick needed to still be living or preserved a specific way, in order to test for the bacteria? SO, I assume having the ticks at this point is not too useful?

As I said, the arthritis was the last symptom I developed, so I will back track a bit. Sometime after being bit, I came down with very increased fatigue and pain (I have had a diagnosis of Fibromyalgia for 13 years, which also causes these symptoms). However, at the same time, I had been diagnosed with hypothyroidism (which also has these same symptoms -and it turns out I had hypothyroidism/Hashimoto's for at least 10 years, but untreated) and had just started on thyroid medication for that, so we wondered if the severely increased fatigue and all over pain might have been a side effect of the thyroid med, while my body adjusted to it - but it seems unlikely, in retrospect - we were still not thinking 'tick' at that time, at all.

While that was going on, the lymph glands on one side of my neck became very enlarged, along with an area right above my jaw (all on the right side of my body, tick was also on my right side). I was getting very sharp ear pain, but once the swelling went down a bit, the ear pain vanished. I then developed upper abdominal swelling (really severe). I could barely eat tiny bits of food as even that would cause so much discomfort and cause me to swell up even more. I began an exercise program of walking and it exacerbated it even more. The more I walked and the less I ate, the bigger I was getting!

At that point (late May), I made an appt with an internist and he had no explanation for any of it. I did not mention the tick, as I had not suspected it at that time. He did a bunch of lab work and it came back with elevated liver tests (about 2-3 times the norm). Again, he had no explanation.

WELL, then the arthritis symptoms hit the beginning of July. I also have a bad rash on the same thigh I was bit, but not at the bite site. This rash has been a problem off and on for years though, but it usually just flares for a bit and then clears up. After the tick bite it kept getting worse and spread to an area about 10x12 inches, when it used to be just a small area. I don't know if this is related? I had eczema as a child and it may be that. I read one report (only one) that said lyme may exacerbate eczema and psoriasis - any one know if that is true?

I went back to the doctor a few weeks ago and told him of the arthritis symptoms and the rash. He never bothered to look at the rash. It is very itchy - can the rash from a deer tick be itchy? I have only read anything in regard to that mentioned in one document that stated it does not itch. He said in light of my liver tests we needed to do certain liver tests again and a hep C test. He also mentioned lyme, before I even got to telling him about the tick bite. He also mentioned testing Rheumatoid Factor and ANA. At that appt, I then mentioned I had been bit by a tick after he brought up doing a lyme test. That was all I/we said about it at the time.

WELL, everything came back negative, except for my liver tests which are still elevated, but only slightly at this time. It wasn't until after I saw the doc this last time, that I began researching about the lyme test and discovered that it is common to get false negatives. From everything I have read on Lyme and rheumatoid, they both say the diagnosis should be made on clinical findings and not on a serum test alone - that the test should only be used to 'support' the clinical findings and one should be treated if the symptoms point to lyme.

The doctor sent out a letter with my results and just pointed out that everything was negative and he had no explanation at the present time for my symptoms. The only action he mentioned was the recommendation to do liver tests again in 2-3 months.

I would love any feedback you might have. I don't know what my next step will be. I am thinking it should be to return to this doctor and point out the timeline of symptoms after the bite and see what he thinks. I am disappointed that with all of my symptoms, he did not have anything to say about the possibility of a false negative test(s). I would much prefer to seek out a rheumatologist, but need a referral from my primary care clinic (this doc or another from there, so figure I will need to see him at least once more and see how that goes first).

Following are my Lyme test results:

Lyme AB Western Blot Reflex
Lyme AB/Total Immunoglobulins 0.30 (range says less than .90 is negative)
Lyme Ab Interp, EIA - Negative
Lyme Disease Ab, Quant, IgM - 0.11 (range says less than .90 is negative)
Lyme Ab IgM Interp., EIA - Negative

Then it has the following comment: IgM levels may peak at 3-6 weeks post infection, then gradually decline. (this test was done anywhere from 3-4 months after the bite)

I also have read in one document that a 'normal' person will not have any antibodies for Lyme - IF this is true, then what do I make of the fact that on the two tests done, they did find some antibodies, but below what they determine to be positive for lyme? Does the test pick up non-specific antibodies that may not be lyme related? [as a side note, if it has any relevance - I do have antibodies for Hashimoto's thyroid disease and have several autoimmune diseases]. I have read the many explanations for false negative tests and can surely see one of them being a possibility.

Sorry this got to be so long! Thanks so much for 'listening.' I appreciate any input you may have.

Best Wishes!
[QUOTE=Peeps;1199172]Hi Everyone,

I have just found this board and could use your input on my situation, please.

My hubby and I feel that Lyme is the most likely diagnosis for my symptoms after having done considerable research on the topic.

I was bit by at least one deer tick this spring. I live in Northern MN and we are surrounded by woods and deer; deer are often in our yard. I found a deer tick attached to my thigh. I removed it with a tweezers. It was barely able to be seen, but we have a magnifying lens and we examined it under that and could see it was engorged, so had been on me for awhile. Around the same time, I found another deer tick that was engorged and had either dropped off my cat or myself, on the bed.

I watched for any signs of a rash at the bite site and none developed. It wasn't until months later, when I developed more symptoms, that I mentioned the tick bite to my hubby again and he informed me that one did not have to have the rash to be infected. Since I have multiple health problems, my symptoms could have been related to other causes and we did not make the connection until I brought the tick bite up again a few months’ later.

The symptom when the light bulb went on was when I woke up one morning and could not bend 3 fingers on both hands, but half way. I went from no joint problems to chronic joint problems over night (started a little over 2 months ago). I researched arthritis and found that rheumatoid arthritis acts like this. It can come on slowly or suddenly and usually affects both sides of the body at the same time, like mine did. SO, I suspected RA or Lyme or both. I was having joint problems in most joints, but the hands are the worst - quite bad.

I have read that lyme 'usually' affects the larger joints, such as the knees and not usually the smaller joints of the hands. Then I read that was not true, it can affect the hands too. I imagine there are exceptions to almost anything. My ring finger on one hand is very bad and getting worse. It is at its worst when I wake up in the morning and in the beginning it would get better throughout the day and then start all over the next morning. Now it does not clear up much during the day. My hands are so cumbersome and stiff! The ring finger pops in the joint in the hand, to be able to move it and is quite painful at times, especially after I force it to bend and then open it again. It also gets hot. The fingers on either side of it are getting worse and nearing the same severity. The pinkie on the other hand is the worst, but the next two are affected also.

Unfortunately, I didn't think to write down the date I found the ticks, but I did save them in separate baggies and labeled where they were found. My hubby and I think it was in April or early May that I removed the tick from my right thigh. I didn't know if the ticks might be able to be tested, but then as I read about the disease, it sounded like that might not be too useful, as it can only tell you if the tick carries the bacteria, but of course, not if you contracted it. It also sounded like the tick needed to still be living or preserved a specific way, in order to test for the bacteria? SO, I assume having the ticks at this point is not too useful?

As I said, the arthritis was the last symptom I developed, so I will back track a bit. Sometime after being bit, I came down with very increased fatigue and pain (I have had a diagnosis of Fibromyalgia for 13 years, which also causes these symptoms). However, at the same time, I had been diagnosed with hypothyroidism (which also has these same symptoms -and it turns out I had hypothyroidism/Hashimoto's for at least 10 years, but untreated) and had just started on thyroid medication for that, so we wondered if the severely increased fatigue and all over pain might have been a side effect of the thyroid med, while my body adjusted to it - but it seems unlikely, in retrospect - we were still not thinking 'tick' at that time, at all.

While that was going on, the lymph glands on one side of my neck became very enlarged, along with an area right above my jaw (all on the right side of my body, tick was also on my right side). I was getting very sharp ear pain, but once the swelling went down a bit, the ear pain vanished. I then developed upper abdominal swelling (really severe). I could barely eat tiny bits of food as even that would cause so much discomfort and cause me to swell up even more. I began an exercise program of walking and it exacerbated it even more. The more I walked and the less I ate, the bigger I was getting!

At that point (late May), I made an appt with an internist and he had no explanation for any of it. I did not mention the tick, as I had not suspected it at that time. He did a bunch of lab work and it came back with elevated liver tests (about 2-3 times the norm). Again, he had no explanation.

WELL, then the arthritis symptoms hit the beginning of July. I also have a bad rash on the same thigh I was bit, but not at the bite site. This rash has been a problem off and on for years though, but it usually just flares for a bit and then clears up. After the tick bite it kept getting worse and spread to an area about 10x12 inches, when it used to be just a small area. I don't know if this is related? I had eczema as a child and it may be that. I read one report (only one) that said lyme may exacerbate eczema and psoriasis - any one know if that is true?

I went back to the doctor a few weeks ago and told him of the arthritis symptoms and the rash. He never bothered to look at the rash. It is very itchy - can the rash from a deer tick be itchy? I have only read anything in regard to that mentioned in one document that stated it does not itch. He said in light of my liver tests we needed to do certain liver tests again and a hep C test. He also mentioned lyme, before I even got to telling him about the tick bite. He also mentioned testing Rheumatoid Factor and ANA. At that appt, I then mentioned I had been bit by a tick after he brought up doing a lyme test. That was all I/we said about it at the time.

WELL, everything came back negative, except for my liver tests which are still elevated, but only slightly at this time. It wasn't until after I saw the doc this last time, that I began researching about the lyme test and discovered that it is common to get false negatives. From everything I have read on Lyme and rheumatoid, they both say the diagnosis should be made on clinical findings and not on a serum test alone - that the test should only be used to 'support' the clinical findings and one should be treated if the symptoms point to lyme.

The doctor sent out a letter with my results and just pointed out that everything was negative and he had no explanation at the present time for my symptoms. The only action he mentioned was the recommendation to do liver tests again in 2-3 months.

I would love any feedback you might have. I don't know what my next step will be. I am thinking it should be to return to this doctor and point out the timeline of symptoms after the bite and see what he thinks. I am disappointed that with all of my symptoms, he did not have anything to say about the possibility of a false negative test(s). I would much prefer to seek out a rheumatologist, but need a referral from my primary care clinic (this doc or another from there, so figure I will need to see him at least once more and see how that goes first).

Following are my Lyme test results:

Lyme AB Western Blot Reflex
Lyme AB/Total Immunoglobulins 0.30 (range says less than .90 is negative)
Lyme Ab Interp, EIA - Negative
Lyme Disease Ab, Quant, IgM - 0.11 (range says less than .90 is negative)
Lyme Ab IgM Interp., EIA - Negative

Then it has the following comment: IgM levels may peak at 3-6 weeks post infection, then gradually decline. (this test was done anywhere from 3-4 months after the bite)

I also have read in one document that a 'normal' person will not have any antibodies for Lyme - IF this is true, then what do I make of the fact that on the two tests done, they did find some antibodies, but below what they determine to be positive for lyme? Does the test pick up non-specific antibodies that may not be lyme related? [as a side note, if it has any relevance - I do have antibodies for Hashimoto's thyroid disease and have several autoimmune diseases]. I have read the many explanations for false negative tests and can surely see one of them being a possibility.

Sorry this got to be so long! Thanks so much for 'listening.' I appreciate any input you may have.

Best Wishes![/QUOTE]





All times are GMT -7. The time now is 12:44 PM.





© 2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!