Aa
Need some closure. I need some help and thoughts.
Hi everyone, I am a 22 year old male from South Georgia. I remember three possible times I had a high risk for being bitten by ticks. Out in the woods and traveling. No tickbite. No rash early. I begin to develop numbness in late August. In both my feet and both my hands as well as my stomach and a swollen and painful left testicle. Neurologist ordered a spinal MRI that came back negative for any lesions. He seemed perplexed because I had no other abnormalities. Tested me for 30 mins and since I had no weakness he figured it was a weightlifting accident and sent me on my way. About a month later I had what felt like a sinus headache for a about a week and loss partial vision down the center of my right eye. As well as a sore throat for about 3 days. Brain MRI revealed retrobulbar optic neurits and what appeared to be MS like lesions on my brain. Report mentioned that they were small and that there was only minimal enhancement with contrast so the MRI report read. Shows signs of Mild MS. My whole life went upside down. I decided I would travel about an hour and a half to another neurologist that was suppose to be very good and was in a group with 3 other neurologist, one of which a MS specialist. Upon checkup my neurologist seemed confused by my lack of abnormalities on his checkup. He and I quote "your healthy as I've ever seen". He then ordered bloodwork and a spinal tap because he wanted to be sure before diagnosis. Spinal tap was negative for MS and may I add that this test is 95% accurate for MS. My labwork came back normal except for an abnormal antibody P41 on my western blot as I passed the elisa part. The day of the spinal tap I began to have muscle twitching. Not in one part of my body, all over, all day. My joints all over my body began to pop like popcorn. My girlfriend would get a good laugh out of this but it still continues. I began to have severe joint pain in my knees, elbows, wrist. It would feel like a knife in the joint and cause stiffness. Well another month passes and I began to have pretty severe rib pain, directly in the rib, and not the MS "hug" around the body. So I went to my regular physician and explained all this to him. He said brother "you got Lyme disease." And I went on antibiotics. doxy for 28 days. Right before I took antibiotics I felt so fatigued and tired and both my feet went a little numb, as well as floaters in my eyes. Well after the 28 days the fatigue lifted and my joint pain became almost nonexistent. It has now been about a month and a half and I have no new symptoms. Just the eye floaters still and muscle twitching. Occasionally I'll get the rib pain but it definitely isn't as bad as before. My feet healed faster then they had before and I feel pretty great except for the twitching. And often throughout the day a joint will pop so violent it feels as if the bones are snapping.I am unfortunately a worry wart and I end up researching MS because of the fear I have of it. I just need some help from my fellow lymies to assure we that I am having way more symptoms of Lyme then I am MS and since the antibiotics helped my joint pain and fatigue, I should be confident in my last diagnosis.
Again, sorry if I repeat something you or Jackie have said, my vision is bad.
I was told I had a mild case of MS, I had lupus and many other things but it was all Lyme.
There are articles I have read where they think all MS is Lyme or a co-infection. My Bartonella lesions caused them to say I have MS.
You more than likely have a co-infection which requires different meds than Lyme.
I was told I had a mild case of MS, I had lupus and many other things but it was all Lyme.
There are articles I have read where they think all MS is Lyme or a co-infection. My Bartonella lesions caused them to say I have MS.
You more than likely have a co-infection which requires different meds than Lyme.
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"It has now been about a month and a half and I have no new symptoms. Just the eye floaters still and muscle twitching." Then I would question whether you were fully diagnosed and completely treated. Lyme have a very slow reproductive cycle, and if you get [appropriate] antibiotics for the usual few weeks given for other ailments, it may well be not long enough, because it is when the bacteria are reproducing and their cell wall is disrupted. The longer the reproductive cycle, the fewer opportunities for effective action by the antibiotics, tho this can be balanced by having 'cyst-busting' meds along with the antibiotics -- I had both antibiotics and cyst-busters, and it was for *months*, not weeks.
"Occasionally I'll get the rib pain but it definitely isn't as bad as before." If you're not 100%, see the doc again, or get a second opinion. You may not have been fully treated.
"My feet healed faster then they had before and I feel pretty great except for the twitching." Twitching may mean the Lyme bacteria are still there, using up your Mg, therefore the bacteria are still live. I'd see a Lyme specialist.
"And often throughout the day a joint will pop so violent it feels as if the bones are snapping." Then something is likely still going on. I'd see a Lyme doc for a second opinion.
"I am unfortunately a worry wart" -- no, you're vigilant, and good for you. I'd get a second opinion from another Lyme specialist. Your first doc sounds okay, but Lyme treatment is an art, and is a still-developing field. I say: go for it. Let us know how you do -- all good wishes!
"It has now been about a month and a half and I have no new symptoms. Just the eye floaters still and muscle twitching." Then I would question whether you were fully diagnosed and completely treated. Lyme have a very slow reproductive cycle, and if you get [appropriate] antibiotics for the usual few weeks given for other ailments, it may well be not long enough, because it is when the bacteria are reproducing and their cell wall is disrupted. The longer the reproductive cycle, the fewer opportunities for effective action by the antibiotics, tho this can be balanced by having 'cyst-busting' meds along with the antibiotics -- I had both antibiotics and cyst-busters, and it was for *months*, not weeks.
"Occasionally I'll get the rib pain but it definitely isn't as bad as before." If you're not 100%, see the doc again, or get a second opinion. You may not have been fully treated.
"My feet healed faster then they had before and I feel pretty great except for the twitching." Twitching may mean the Lyme bacteria are still there, using up your Mg, therefore the bacteria are still live. I'd see a Lyme specialist.
"And often throughout the day a joint will pop so violent it feels as if the bones are snapping." Then something is likely still going on. I'd see a Lyme doc for a second opinion.
"I am unfortunately a worry wart" -- no, you're vigilant, and good for you. I'd get a second opinion from another Lyme specialist. Your first doc sounds okay, but Lyme treatment is an art, and is a still-developing field. I say: go for it. Let us know how you do -- all good wishes!
Welcome to MedHelp -- sorry you are not feeling well, but good for you for plowing ahead to figure out what is going on. A few specific comments on your post:
"... from South Georgia. I remember three possible times I had a high risk for being bitten by ticks. Out in the woods and traveling." Lyme ticks are everywhere, despite what the docs say. I'm no woodsy owl, I don't camp, I don't hike in the countryside, but I got Lyme: I live in a city, but every park and flower bed and passing cat or dog can carry ticks and thus Lyme. All it takes is a tick to fall off a dog passing by you're at risk, but docs sometimes shrug if you're not fresh out of the woods. One other aspect is that the medical profession tends to think in static terms and does not take well to the idea of a fast-spreading infection.
So like you, I saw no tick bite and no rash. Any doc who requires one or both to make a Lyme diagnosis isn't clued in, and each of us has a somewhat different symptom array because about half the time, the 'Lyme' tick also carries one or more other infections ('co-infections' as a group) unrelated to Lyme, which have their own set of symptom and require separate testing and often separate treatment.
"Neurologist ordered a spinal MRI that came back negative for any lesions." MRIs are not, to my reading, useful in diagnosis or ruling out Lyme. Neurologists are among the biggest and loudest Lyme deniers, so I personally wouldn't but any weight on the negative diagnosis.
You say: "About a month later I had what felt like a sinus headache for a about a week and loss partial vision down the center of my right eye." Please consider seeing an ophthalmologist (MD who specializes in eyes) for a check up. Of all the varieties of MDs I saw during and after my Lyme diagnosis, the eye doc was the most clued-in. I was very surprised, but as a group, they are clued in. Lyme can do nasty things to eyes, it seems. It's also possible an ophthalmologist could give you the names of other MDs who could work with you on the whole Lyme situation overall. To me, the first and most important qualification in a doc dealing with a possible Lyme case is to *believe* that Lyme is serious and widespread. If it were I, I wouldn't worry about it being MS until Lyme is ruled out by a competent Lyme specialist.
You say: "I decided I would travel about an hour and a half to another neurologist that was suppose to be very good and was in a group with 3 other neurologist, one of which a MS specialist." I can understand your alarm. To my understanding, evidence of Lyme is not often found in spinal fluid, esp. if the doc didn't look for it. There is a huge blind spot for many docs when it comes to Lyme, and they often don't even consider it in the differential diagnosis.
"My labwork came back normal except for an abnormal antibody P41 on my western blot as I passed the elisa part." Band 41 is highly indicative of Lyme, and to my understanding, that means your doc isn't up to date with Lyme testing and diagnosis. Part of the reason clueless docs dismiss the importance of indicators like band 41 is that the earlier requirements to diagnosis Lyme were intended not for clinical purposes (that is, looking at a specific patient and trying to diagnose their ailment), but for research purposes (that is, having absolute, no-question-at-all test results for test tube work). Research standards are far, far higher than diagnostic requirements when faced with an ill patient, but some years ago, the docs who then were the leading lights in Lyme decided to apply the *research* standards to diagnosing individual patients: wrong! But there are many docs who still operate that way.
(When I was ill with what turned out to be Lyme and a co-infection, one of my long line of docs looked at my positive Lyme test and told me I 'could not possibly have Lyme' because I didn't have the research-standard number of positive results. She was wrong to dismiss the result as unimportant, but fortunately I had an old friend who had had Lyme, and so I knew to *run* to a real Lyme doc, who indeed confirmed Lyme and then treated and cured me.)
"The day of the spinal tap I began to have muscle twitching." Whether that is directly related to the tap, I don't know, but twitching is common in Lyme because the Lyme bacteria use up magnesium (Mg) in your body, and low Mg makes your muscles twitch. You could try taking Mg supplements (any formulation ending in "-ate", such as Mg malate, orotate, aspartate, etc., and see if it helps, but remember to tell your Lyme doc (when you get there) that you are taking Mg so it can be factored in to your condition. Might also help your joint popping. I've read not to take the calcium-and-magnesium combination pills because the Mg may not be the best quality.
"I began to have severe joint pain in my knees, elbows, wrist. It would feel like a knife in the joint and cause stiffness. Well another month passes and I began to have pretty severe rib pain, directly in the rib, and not the MS "hug" around the body." Lyme likes to hide in cartilage, and that's exactly the areas you list. Mg should help, but again be sure to tell your Lyme doc you are taking it so s/he can factor it in to your condition.
You say, "So I went to my regular physician and explained all this to him. He said brother 'you got Lyme disease.' " That's a wise doc. Here's a possible problem, tho: Doxy works against Lyme *only* if taken very very soon after initial infection, and many of us don't know when we were bitten, or if we see a tick, we may have been bitten previously and didn't know it. It's good news that you are feeling better now that the month of doxy is finished, but if you are not 100% now, I would get a second opinion from a Lyme specialist. You don't need to tell your current doc, but get copies of all your tests from the doc ([tell the clerk 'it's for my files' -- you don't need to tell your current doc you are getting a second opinion if you think it would get the doc huffy -- but when it comes to a huffy doc vs having continuing and uncured infections like Lyme, I'd be *sure* to deal fully with Lyme. If your doc is that easily offended, you need a new doc anyway. Lyme is a serious and emerging disease in the same family as syphilis, and that's dangerous stuff.)
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"... from South Georgia. I remember three possible times I had a high risk for being bitten by ticks. Out in the woods and traveling." Lyme ticks are everywhere, despite what the docs say. I'm no woodsy owl, I don't camp, I don't hike in the countryside, but I got Lyme: I live in a city, but every park and flower bed and passing cat or dog can carry ticks and thus Lyme. All it takes is a tick to fall off a dog passing by you're at risk, but docs sometimes shrug if you're not fresh out of the woods. One other aspect is that the medical profession tends to think in static terms and does not take well to the idea of a fast-spreading infection.
So like you, I saw no tick bite and no rash. Any doc who requires one or both to make a Lyme diagnosis isn't clued in, and each of us has a somewhat different symptom array because about half the time, the 'Lyme' tick also carries one or more other infections ('co-infections' as a group) unrelated to Lyme, which have their own set of symptom and require separate testing and often separate treatment.
"Neurologist ordered a spinal MRI that came back negative for any lesions." MRIs are not, to my reading, useful in diagnosis or ruling out Lyme. Neurologists are among the biggest and loudest Lyme deniers, so I personally wouldn't but any weight on the negative diagnosis.
You say: "About a month later I had what felt like a sinus headache for a about a week and loss partial vision down the center of my right eye." Please consider seeing an ophthalmologist (MD who specializes in eyes) for a check up. Of all the varieties of MDs I saw during and after my Lyme diagnosis, the eye doc was the most clued-in. I was very surprised, but as a group, they are clued in. Lyme can do nasty things to eyes, it seems. It's also possible an ophthalmologist could give you the names of other MDs who could work with you on the whole Lyme situation overall. To me, the first and most important qualification in a doc dealing with a possible Lyme case is to *believe* that Lyme is serious and widespread. If it were I, I wouldn't worry about it being MS until Lyme is ruled out by a competent Lyme specialist.
You say: "I decided I would travel about an hour and a half to another neurologist that was suppose to be very good and was in a group with 3 other neurologist, one of which a MS specialist." I can understand your alarm. To my understanding, evidence of Lyme is not often found in spinal fluid, esp. if the doc didn't look for it. There is a huge blind spot for many docs when it comes to Lyme, and they often don't even consider it in the differential diagnosis.
"My labwork came back normal except for an abnormal antibody P41 on my western blot as I passed the elisa part." Band 41 is highly indicative of Lyme, and to my understanding, that means your doc isn't up to date with Lyme testing and diagnosis. Part of the reason clueless docs dismiss the importance of indicators like band 41 is that the earlier requirements to diagnosis Lyme were intended not for clinical purposes (that is, looking at a specific patient and trying to diagnose their ailment), but for research purposes (that is, having absolute, no-question-at-all test results for test tube work). Research standards are far, far higher than diagnostic requirements when faced with an ill patient, but some years ago, the docs who then were the leading lights in Lyme decided to apply the *research* standards to diagnosing individual patients: wrong! But there are many docs who still operate that way.
(When I was ill with what turned out to be Lyme and a co-infection, one of my long line of docs looked at my positive Lyme test and told me I 'could not possibly have Lyme' because I didn't have the research-standard number of positive results. She was wrong to dismiss the result as unimportant, but fortunately I had an old friend who had had Lyme, and so I knew to *run* to a real Lyme doc, who indeed confirmed Lyme and then treated and cured me.)
"The day of the spinal tap I began to have muscle twitching." Whether that is directly related to the tap, I don't know, but twitching is common in Lyme because the Lyme bacteria use up magnesium (Mg) in your body, and low Mg makes your muscles twitch. You could try taking Mg supplements (any formulation ending in "-ate", such as Mg malate, orotate, aspartate, etc., and see if it helps, but remember to tell your Lyme doc (when you get there) that you are taking Mg so it can be factored in to your condition. Might also help your joint popping. I've read not to take the calcium-and-magnesium combination pills because the Mg may not be the best quality.
"I began to have severe joint pain in my knees, elbows, wrist. It would feel like a knife in the joint and cause stiffness. Well another month passes and I began to have pretty severe rib pain, directly in the rib, and not the MS "hug" around the body." Lyme likes to hide in cartilage, and that's exactly the areas you list. Mg should help, but again be sure to tell your Lyme doc you are taking it so s/he can factor it in to your condition.
You say, "So I went to my regular physician and explained all this to him. He said brother 'you got Lyme disease.' " That's a wise doc. Here's a possible problem, tho: Doxy works against Lyme *only* if taken very very soon after initial infection, and many of us don't know when we were bitten, or if we see a tick, we may have been bitten previously and didn't know it. It's good news that you are feeling better now that the month of doxy is finished, but if you are not 100% now, I would get a second opinion from a Lyme specialist. You don't need to tell your current doc, but get copies of all your tests from the doc ([tell the clerk 'it's for my files' -- you don't need to tell your current doc you are getting a second opinion if you think it would get the doc huffy -- but when it comes to a huffy doc vs having continuing and uncured infections like Lyme, I'd be *sure* to deal fully with Lyme. If your doc is that easily offended, you need a new doc anyway. Lyme is a serious and emerging disease in the same family as syphilis, and that's dangerous stuff.)
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