Aa
please advise me could that be lyme or another thing ?
For a year now I have been having unexplained bruising exclusively on lower legs...
Pulsatile tinnitus in right ear ( when u hear ur heart beat in your ear especially when I move my head certain way like bend over, so not constant )
dizziness spell..eyes pain..
Pain behind the lower head and neck and behind ears ...
tingling in Right temple and between eyes sometimes ...very very brief blurred vision ..
heaviness feeling in my left shoulder at the edge and under armpit.( so my left breast feels heavy, and it feels like the whole area there like someone is pressing on it and it feels just weird can't explain the feelings
varicose vein on my thighs..pain in legs when i walk that feels like I am pressing a nerve at the front of my lower legs.among other symptoms ...
The only positive test is ANA : 1320 homogeneous and MTHFR ( compound heterogeneous)... Could my symptoms be neurological or autoimmune ? But if neurological, could my ANA be accidental finding ? could it be heart problem ?
lyme test was negative but the original test not Ignex test cause cannot afford it.
I don't know where to go from here .my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free..
I saw Rhuematologist, neuro, eye doctor ( saw small hemorrhage in back of eye once then resolved and haven't being seen in a year now), Ent ( normal hearing test)... MRI/MRA normal
Please advise me.. I am at my lowest point in life ....what could be wrong with me from your experience ? could it be more than one thing ? Lyme ?
attached is a photo of some lesions I get on my legs in addition to bruising.and this was one of my first symptoms
Pulsatile tinnitus in right ear ( when u hear ur heart beat in your ear especially when I move my head certain way like bend over, so not constant )
dizziness spell..eyes pain..
Pain behind the lower head and neck and behind ears ...
tingling in Right temple and between eyes sometimes ...very very brief blurred vision ..
heaviness feeling in my left shoulder at the edge and under armpit.( so my left breast feels heavy, and it feels like the whole area there like someone is pressing on it and it feels just weird can't explain the feelings
varicose vein on my thighs..pain in legs when i walk that feels like I am pressing a nerve at the front of my lower legs.among other symptoms ...
The only positive test is ANA : 1320 homogeneous and MTHFR ( compound heterogeneous)... Could my symptoms be neurological or autoimmune ? But if neurological, could my ANA be accidental finding ? could it be heart problem ?
lyme test was negative but the original test not Ignex test cause cannot afford it.
I don't know where to go from here .my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free..
I saw Rhuematologist, neuro, eye doctor ( saw small hemorrhage in back of eye once then resolved and haven't being seen in a year now), Ent ( normal hearing test)... MRI/MRA normal
Please advise me.. I am at my lowest point in life ....what could be wrong with me from your experience ? could it be more than one thing ? Lyme ?
attached is a photo of some lesions I get on my legs in addition to bruising.and this was one of my first symptoms
for me it is been a year of symptoms so would that have caused positive ANA or it could be something else ?
they tested me for MTHFR ( my rheumatologist) cause the optician saw a hemorrhage at the back of my eye and she was concerned about it, so she ordered that test maybe to look ofr orders in clotting and stuff ...so I am not sure...but you scared me now that it may be difficult for me to detox IF I have lyme
they tested me for MTHFR ( my rheumatologist) cause the optician saw a hemorrhage at the back of my eye and she was concerned about it, so she ordered that test maybe to look ofr orders in clotting and stuff ...so I am not sure...but you scared me now that it may be difficult for me to detox IF I have lyme
My question is why did you test for MTHFR? I have 2 of the gene mutations as do many Lyme patients. This mutation prevents us from detoxing properly. Many Lyme patients have this mutation and are told to test for it by their LLMD like I was.
In addition after a long time (22 years in my case) Lyme causes positive autoimmune responses as I had a positive lupus test. With treatment it is no longer positive.
In addition after a long time (22 years in my case) Lyme causes positive autoimmune responses as I had a positive lupus test. With treatment it is no longer positive.
One more comment:
Your question: "Could my symptoms be neurological or autoimmune?"
I assume your docs have tested you for immune (or idiopathic) thrombocytopenia ["ITP"], which is when the platelets in your blood are insufficient and don't properly cause clotting when you break a blood vessel and get a bruise. The clotting usually stops, just later than it would otherwise.
There is sometimes an autoimmune component to ITP, and other times it is caused by a virus, as I recall. I knew someone years ago who had it.
-- If it's caused by a virus, then when the virus goes away, the clotting comes back to normal.
-- If it's cause by autoimmunity, your body starts to view the platelets as invaders and destroys them. The treatment for this cause was, some years ago, to slightly suppress the immune system for a couple of months (by taking a course of particular steroid meds) to 'reset' the immune system so it would stop gobbling up the platelets. Don't know what the current treatments are.
Whether this is affecting you, I don't know, I'm not medically trained, but thought I would throw it out there. Don't freak over it -- it is not a huge deal, and once treated, all is well, in my friend's experience.
=====================
and PS -- I realized too late that the first four lines of typing in my first post above should have been deleted -- it was me copy/pasting part of your post so I would have it to re-read easily. Should have deleted it, sorry for the confusion.
Your question: "Could my symptoms be neurological or autoimmune?"
I assume your docs have tested you for immune (or idiopathic) thrombocytopenia ["ITP"], which is when the platelets in your blood are insufficient and don't properly cause clotting when you break a blood vessel and get a bruise. The clotting usually stops, just later than it would otherwise.
There is sometimes an autoimmune component to ITP, and other times it is caused by a virus, as I recall. I knew someone years ago who had it.
-- If it's caused by a virus, then when the virus goes away, the clotting comes back to normal.
-- If it's cause by autoimmunity, your body starts to view the platelets as invaders and destroys them. The treatment for this cause was, some years ago, to slightly suppress the immune system for a couple of months (by taking a course of particular steroid meds) to 'reset' the immune system so it would stop gobbling up the platelets. Don't know what the current treatments are.
Whether this is affecting you, I don't know, I'm not medically trained, but thought I would throw it out there. Don't freak over it -- it is not a huge deal, and once treated, all is well, in my friend's experience.
=====================
and PS -- I realized too late that the first four lines of typing in my first post above should have been deleted -- it was me copy/pasting part of your post so I would have it to re-read easily. Should have deleted it, sorry for the confusion.
PS -- about paying for the LLMD:
Many Lyme docs do not accept insurance, because they don't like fighting with the insurance companies to get paid, and because they don't want to pay a platoon of billing clerks to push all the paperwork.
Many Lyme docs keep a very small staff, so the costs can be kept more reasonable. I got a detailed bill from my doc, paid it, and sent the bill on to my then-insurance company (one of the national biggies), who promptly reimbursed me for the equivalent of 'out of network' doc visits. All tests were paid for at the usual reimbursement rate.
Many Lyme docs do not accept insurance, because they don't like fighting with the insurance companies to get paid, and because they don't want to pay a platoon of billing clerks to push all the paperwork.
Many Lyme docs keep a very small staff, so the costs can be kept more reasonable. I got a detailed bill from my doc, paid it, and sent the bill on to my then-insurance company (one of the national biggies), who promptly reimbursed me for the equivalent of 'out of network' doc visits. All tests were paid for at the usual reimbursement rate.
[continued from previous post]
You say: "I saw Rhuematologist, neuro, eye doctor (saw small hemorrhage in back of eye once then resolved and haven't being seen in a year now), Ent ( normal hearing test)... MRI/MRA normal"
My comments:
-- Rheumatologists: As a group, not known for understanding Lyme and its co-infections.
-- Neurologists: Ditto.
-- Ophthalmologists: As mentioned, these docs are often the most Lyme-aware of MDs, but yours may have missed the diagnosis. Nobody's perfect, and your eye exam may simply not have produced any evidence of infection, tho it was there. You know the saying, "Absence of evidence is not evidence of absence"? Exactly.
-- ENT: not surprised nothing was found. The bacteria would not be 'seen' on a usual ENT visual exam.
-- MRI/MRA: To my knowledge, not useful in diagnosing or ruling out Lyme. Might note swelling of the brain, but wouldn't visualize Lyme bacteria or their colonies.
Lyme is tricky in its manifestations, and can be primarily neurological, or primarily joints, etc. That's why seeing a Lyme specialist may be helpful.
You also ask: "could it be more than one thing ? Lyme ?" About half the time, Lyme bacteria are accompanied by co-infections, which are different from Lyme, but are often carried by the 'Lyme' ticks. These diseases often produce different symptoms from those of Lyme, or may be hidden by Lyme symptoms.
You say: "my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free." That's not unusual. The Lyme bacteria have life cycles that cause symptoms to rise and fall (tho not noticeably in everyone), and they tend to do so over days rather than the 20-minute life cycles that more common bacteria have.
In your situation, I would find a Lyme specialist, taking copies of your previous tests (if you have them), and a short summary of your illness and its symptoms and for how long it has gone on.
We generally do NOT name Lyme docs' names here in public, but if you would like to tell us generally where you live ("Toledo OH"), someone here may be able to recommend a Lyme doc near you. Not all docs who practice in the Lyme field are as good as the rest, so keep your antennae up. But you gotta start somewhere.
Let us know how we can help. I beat Lyme and babesiosis after consulting my 20th MD, and I wish for you a return to full health as well. Let us know how we can help.
You say: "I saw Rhuematologist, neuro, eye doctor (saw small hemorrhage in back of eye once then resolved and haven't being seen in a year now), Ent ( normal hearing test)... MRI/MRA normal"
My comments:
-- Rheumatologists: As a group, not known for understanding Lyme and its co-infections.
-- Neurologists: Ditto.
-- Ophthalmologists: As mentioned, these docs are often the most Lyme-aware of MDs, but yours may have missed the diagnosis. Nobody's perfect, and your eye exam may simply not have produced any evidence of infection, tho it was there. You know the saying, "Absence of evidence is not evidence of absence"? Exactly.
-- ENT: not surprised nothing was found. The bacteria would not be 'seen' on a usual ENT visual exam.
-- MRI/MRA: To my knowledge, not useful in diagnosing or ruling out Lyme. Might note swelling of the brain, but wouldn't visualize Lyme bacteria or their colonies.
Lyme is tricky in its manifestations, and can be primarily neurological, or primarily joints, etc. That's why seeing a Lyme specialist may be helpful.
You also ask: "could it be more than one thing ? Lyme ?" About half the time, Lyme bacteria are accompanied by co-infections, which are different from Lyme, but are often carried by the 'Lyme' ticks. These diseases often produce different symptoms from those of Lyme, or may be hidden by Lyme symptoms.
You say: "my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free." That's not unusual. The Lyme bacteria have life cycles that cause symptoms to rise and fall (tho not noticeably in everyone), and they tend to do so over days rather than the 20-minute life cycles that more common bacteria have.
In your situation, I would find a Lyme specialist, taking copies of your previous tests (if you have them), and a short summary of your illness and its symptoms and for how long it has gone on.
We generally do NOT name Lyme docs' names here in public, but if you would like to tell us generally where you live ("Toledo OH"), someone here may be able to recommend a Lyme doc near you. Not all docs who practice in the Lyme field are as good as the rest, so keep your antennae up. But you gotta start somewhere.
Let us know how we can help. I beat Lyme and babesiosis after consulting my 20th MD, and I wish for you a return to full health as well. Let us know how we can help.
The only positive test is ANA : 1320 homogeneous and MTHFR ( compound heterogeneous)... Could my symptoms be neurological or autoimmune ? But if neurological, could my ANA be accidental finding ? could it be heart problem ?
lyme test was negative but the original test not Ignex test cause cannot afford it.
Welcome to the Lyme page --
I see you have been a MedHelp member for several months, so you may have already may a tour of other likely groups here. Lyme is often far down the list of possibilities, partly because it can present with a wide variety of symptoms, depending on (for example) which other infections the 'Lyme' bacteria were carrying when you were bitten, which happens in about half of Lyme patients.
About the bruising, I just searched online for -- lyme disease bruising -- and found quite a few 'hits' -- so yes, it would appear it is indeed possible.
Your questions, "Could my symptoms be neurological or autoimmune ? But if neurological, could my ANA be accidental finding ? could it be heart problem ?" Short answer: I don't know. Lyme manifests in different ways in different people, partly because the Lyme bacteria are often accompanied by one or more other bacterial infections completely different from Lyme, but carried by the 'Lyme' ticks. That mix of infections, combined with the variabilities of the human immune reaction, can produce symptoms that don't appear in everyone.
Rather than trying to rule out Lyme because there are some symptoms not always or often seen in Lyme, I would look at the the other way: what symptoms do you *have* that are consistent with Lyme. A wise doc is the right person to do that.
You say: "lyme test was negative but the original test not Ignex test cause cannot afford it." You probably already know that IGeneX tests are favored by many LLMDs, because they rely on finding Lyme DNA (direct evidence) rather than on your immune system's reaction to Lyme (indirect evidence). Lyme can and does suppress the human immune system, so it is possible to test negative on the Western blot/ELISA tests (which rely on the immune system reaction) because those tests look for immune system reaction.
Non-LLMDs rely most often on W.blot/ELISA tests, so it is easy to get a negative test result, and that may be why your test was negative (if you have Lyme). Also, at a certain point, the human immune system stops fighting infections of all kinds (including Lyme) because, through evolution over the millenia, the human immune system has adapted to bacteria with short life cycles (as most of them are), so there is no need at that point for the immune system to keep churning out antibodies.
But Lyme is *special* that way: it has a comparatively long life cycle, and so can outlast the immune system's attack while also hiding in slimy shields the bacteria create called 'biofilms'. The immune system can't get into the biofilms, and after the usual period of time, the immune system figures it has probably wiped out the bacteria. It's like a beat cop who hangs around a dark street till midnight and then goes his way because he figures the bad guys have all gone home. Lyme doesn't play by those rules, and thus can evade the human immune system in several aspects.
All of that I just wrote are aspects of Lyme that non-Lyme docs do not understand or believe, so a couple weeks of doxycycline is the usual treatment. Unfortunately, doxy can't penetrate the biofilms, and the Lyme bacteria just wait out the doxy and then come out to play later, when the immune system has assumed (as it learned through evolution) all good bacteria have gone home.
I rattle on here to explain why you need to find your way to a Lyme specialist. Regular docs don't understand and/or don't believe all of that (above) about Lyme bacteria.
You say: "I don't know where to go from here .my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free.." That's not unusual. Lyme life cycles do that.
[continued in next message window]
lyme test was negative but the original test not Ignex test cause cannot afford it.
Welcome to the Lyme page --
I see you have been a MedHelp member for several months, so you may have already may a tour of other likely groups here. Lyme is often far down the list of possibilities, partly because it can present with a wide variety of symptoms, depending on (for example) which other infections the 'Lyme' bacteria were carrying when you were bitten, which happens in about half of Lyme patients.
About the bruising, I just searched online for -- lyme disease bruising -- and found quite a few 'hits' -- so yes, it would appear it is indeed possible.
Your questions, "Could my symptoms be neurological or autoimmune ? But if neurological, could my ANA be accidental finding ? could it be heart problem ?" Short answer: I don't know. Lyme manifests in different ways in different people, partly because the Lyme bacteria are often accompanied by one or more other bacterial infections completely different from Lyme, but carried by the 'Lyme' ticks. That mix of infections, combined with the variabilities of the human immune reaction, can produce symptoms that don't appear in everyone.
Rather than trying to rule out Lyme because there are some symptoms not always or often seen in Lyme, I would look at the the other way: what symptoms do you *have* that are consistent with Lyme. A wise doc is the right person to do that.
You say: "lyme test was negative but the original test not Ignex test cause cannot afford it." You probably already know that IGeneX tests are favored by many LLMDs, because they rely on finding Lyme DNA (direct evidence) rather than on your immune system's reaction to Lyme (indirect evidence). Lyme can and does suppress the human immune system, so it is possible to test negative on the Western blot/ELISA tests (which rely on the immune system reaction) because those tests look for immune system reaction.
Non-LLMDs rely most often on W.blot/ELISA tests, so it is easy to get a negative test result, and that may be why your test was negative (if you have Lyme). Also, at a certain point, the human immune system stops fighting infections of all kinds (including Lyme) because, through evolution over the millenia, the human immune system has adapted to bacteria with short life cycles (as most of them are), so there is no need at that point for the immune system to keep churning out antibodies.
But Lyme is *special* that way: it has a comparatively long life cycle, and so can outlast the immune system's attack while also hiding in slimy shields the bacteria create called 'biofilms'. The immune system can't get into the biofilms, and after the usual period of time, the immune system figures it has probably wiped out the bacteria. It's like a beat cop who hangs around a dark street till midnight and then goes his way because he figures the bad guys have all gone home. Lyme doesn't play by those rules, and thus can evade the human immune system in several aspects.
All of that I just wrote are aspects of Lyme that non-Lyme docs do not understand or believe, so a couple weeks of doxycycline is the usual treatment. Unfortunately, doxy can't penetrate the biofilms, and the Lyme bacteria just wait out the doxy and then come out to play later, when the immune system has assumed (as it learned through evolution) all good bacteria have gone home.
I rattle on here to explain why you need to find your way to a Lyme specialist. Regular docs don't understand and/or don't believe all of that (above) about Lyme bacteria.
You say: "I don't know where to go from here .my symptoms come and go..and rotate so each day one symptom and the next another..other days symptoms free.." That's not unusual. Lyme life cycles do that.
[continued in next message window]
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