Aa
Neurologist Testing - MRI showed white matter
Ok, will try to put 2+ years info in a short form as possible.
May 2010 - bitten but didn't find tick but had bite that itched for days
July 2010 - started all the typical Lyme symptoms, tested negative by primary physician, learned about IGENEX on internet and Lyme Forums ... very positive test back from IGENEX and began treatment with LLMD in TN. Was on heavy abx and supp protocol for 5 months ... lots of herxing and finally stopped because of side effects and just plain tired of it all. Did pretty well except occasion muscle twitching for 2 years.
May 2012 - bitten by at least 3 ticks that I found stuck to me, one engorged on my belly during the night.
Week later - symptoms restarted ... went back to my former LLMD ... this time he sent out Lyme and Co-infection tests through a local lab even though HE was the one who insisted I go through IGENEX last time. All tests came back NEGATIVE.
(ON MY OWN, prior to my LLMD, I sent in the engorged tick myself to IGENEX ... it came back NEGATIVE for Lyme ... I didn't have it tested for co-infections.)
LLMD only gave me the typical Doxycycline script but it was a very high dose and told me to take for a month. After 3 weeks, I had the horrible rash and had to stop it .... took 2 weeks plus a Medrol pack (steroid) to finally clear the nasty thing up! Went back to see him for rash and he didn't even sit down and rushed me out saying that it was the typical Doxy rash and he sees them all the time. He then said that if I wanted to discuss my other symptoms I would need to schedule a follow-up appt. (This appt was made my my local walk-in clinic because when they saw the severity of the DOxy rash, they scheduled an appt with the prescribing MD, my LLMD) Anyway, when he said all of my labs were fine and I asked then why the symptoms all over again, he said, "I have NO idea!" The tone in his voice was also as if to say, "and I don't really care". SO, here I am ...without an LLMD and feeling worse than EVER!
Current symptoms ... balance problems, SEVERE sharp pains in my head, neck and face .... almost constantly ... bad headaches daily ... stiff neck and pain, hurts to turn from side to side .... feeling of "fullness" in my left ear and seems like I have some hearing loss at times.... Today I had a buzzing feeling in my right foot and / or ankle with every step I took ... it was like a buzzing vibration. Also today, I dropped my fork while eating out at Cracker Barrel and it was because my hand / fingers suddenly went numb. Then I almost fell as I was walking out the door of the restaurant ... not on the steps but from the interior of the building.
I recently had an MRI of my brain and neck and the doctor's office (neuro) called and said that there were white matter spots and a mild bulging disc but that she would talk to me more in detail at my appointment which is this coming Tuesday (July 10). She also drew lots of blood for many tests and I will get those results as well. She did NOT do a Lyme test as she was adamant about how "rare" it is in the south and mostly in the North East. I just briefly told her about my above Lyme "issues" and she basically laughed it all off.
I knew beforehand (due to Lyme community) that she would most likely act that way and at this point, I don't care so much as I just want HELP! I am getting worse every single day and scared to death. I truly DO have the symptoms of MS now .... and I guess I am posting all of this to see your opinions. Can Lyme Disease actually cause MS after the Lyme is cleared ... can it sort of cause a permanent damage of MS???
Sorry for the long post but I am desperate here!
Kim
May 2010 - bitten but didn't find tick but had bite that itched for days
July 2010 - started all the typical Lyme symptoms, tested negative by primary physician, learned about IGENEX on internet and Lyme Forums ... very positive test back from IGENEX and began treatment with LLMD in TN. Was on heavy abx and supp protocol for 5 months ... lots of herxing and finally stopped because of side effects and just plain tired of it all. Did pretty well except occasion muscle twitching for 2 years.
May 2012 - bitten by at least 3 ticks that I found stuck to me, one engorged on my belly during the night.
Week later - symptoms restarted ... went back to my former LLMD ... this time he sent out Lyme and Co-infection tests through a local lab even though HE was the one who insisted I go through IGENEX last time. All tests came back NEGATIVE.
(ON MY OWN, prior to my LLMD, I sent in the engorged tick myself to IGENEX ... it came back NEGATIVE for Lyme ... I didn't have it tested for co-infections.)
LLMD only gave me the typical Doxycycline script but it was a very high dose and told me to take for a month. After 3 weeks, I had the horrible rash and had to stop it .... took 2 weeks plus a Medrol pack (steroid) to finally clear the nasty thing up! Went back to see him for rash and he didn't even sit down and rushed me out saying that it was the typical Doxy rash and he sees them all the time. He then said that if I wanted to discuss my other symptoms I would need to schedule a follow-up appt. (This appt was made my my local walk-in clinic because when they saw the severity of the DOxy rash, they scheduled an appt with the prescribing MD, my LLMD) Anyway, when he said all of my labs were fine and I asked then why the symptoms all over again, he said, "I have NO idea!" The tone in his voice was also as if to say, "and I don't really care". SO, here I am ...without an LLMD and feeling worse than EVER!
Current symptoms ... balance problems, SEVERE sharp pains in my head, neck and face .... almost constantly ... bad headaches daily ... stiff neck and pain, hurts to turn from side to side .... feeling of "fullness" in my left ear and seems like I have some hearing loss at times.... Today I had a buzzing feeling in my right foot and / or ankle with every step I took ... it was like a buzzing vibration. Also today, I dropped my fork while eating out at Cracker Barrel and it was because my hand / fingers suddenly went numb. Then I almost fell as I was walking out the door of the restaurant ... not on the steps but from the interior of the building.
I recently had an MRI of my brain and neck and the doctor's office (neuro) called and said that there were white matter spots and a mild bulging disc but that she would talk to me more in detail at my appointment which is this coming Tuesday (July 10). She also drew lots of blood for many tests and I will get those results as well. She did NOT do a Lyme test as she was adamant about how "rare" it is in the south and mostly in the North East. I just briefly told her about my above Lyme "issues" and she basically laughed it all off.
I knew beforehand (due to Lyme community) that she would most likely act that way and at this point, I don't care so much as I just want HELP! I am getting worse every single day and scared to death. I truly DO have the symptoms of MS now .... and I guess I am posting all of this to see your opinions. Can Lyme Disease actually cause MS after the Lyme is cleared ... can it sort of cause a permanent damage of MS???
Sorry for the long post but I am desperate here!
Kim
Sorry to hear about your LLMD. He doesn't sound like much of an LLMD to me, and it seems that perhaps he is getting frustrated with patients who keep coming back complaining of ongoing symptoms after he thought he had cured them. (Hmmm. I wonder if that is what happened with the "Lyme deniers" in the IDSA?)
I know it sounds daunting to travel out of state to a different doc, but your life is worth it. A life with chronic Lyme is miserable. And the longer you have it, the harder it is to treat. I know that more than half of my doc's patients are from out of the area. He even gets patients flying in from other countries. If a local doc will work with him, he is willing to hold appointments over the phone, with the local doctor prescribing what he recommends. Perhaps your current doc would be willing to do this.
You might also try to find a local support group to see what suggestions they might have. There may be others practicing "under the radar."
I know it sounds daunting to travel out of state to a different doc, but your life is worth it. A life with chronic Lyme is miserable. And the longer you have it, the harder it is to treat. I know that more than half of my doc's patients are from out of the area. He even gets patients flying in from other countries. If a local doc will work with him, he is willing to hold appointments over the phone, with the local doctor prescribing what he recommends. Perhaps your current doc would be willing to do this.
You might also try to find a local support group to see what suggestions they might have. There may be others practicing "under the radar."
Good for you for making the effort. Hmm. If you are close to another state, you could try finding an LLMD there if your current doc doesn't snap to. Tennessee touches eight other states, yes? It's a hassle, but sometimes worth it.
I'd do what you are doing -- have an upfront chat with the doc and see where it goes. Docs always make me nervous, but they're only people too.
Hang in there, let us know how it goes, okay?
I'd do what you are doing -- have an upfront chat with the doc and see where it goes. Docs always make me nervous, but they're only people too.
Hang in there, let us know how it goes, okay?
I have recently contacted IDLADS and they do not know of another one in my state other than the one I was seeing! I did send him a message that he will hopefully read tomorrow morning. It just explained my worsening symptoms, told him of my recent neuro visit and MRIs and point blank asked him if he is experiencing "burn out" with treating Lyme patients or what! *sigh*
Jackie is right, I went to a doc who sent me for an MRI and saw white matter damage and lesions, I was misdiagnosed with MS. When I finally went to an LLMD, she told me it was Lyme, I had the same neuro symptoms but I found out it was due to my co-infection, bartonella. I agree, you need to find a new LLMD who will test and treat for co-infections?
Good luck!
Good luck!
Welcome -- you give good, coherent history, which is hard to do about Lyme, and esp. when you HAVE Lyme!
No time to give a full answer right now, but just a quick note to say don't despair. I'm not medically trained, but here are my first thoughts:
1 -- Lyme does not cause MS or turn into MS according to everything I have read.
2 -- Docs who do not understand Lyme often use an MRI to diagnose whatever is going on, but because the MRI results can look the same or similar in Lyme as in MS, a doc who 'believes' in MS but not in Lyme will naturally lean heavily toward diagnosing MS. That easily leads to an incorrect diagnosis of MS when you actually have Lyme.
3 -- Lyme is a bacterial infection, which needs your immune system to fight the infection. Steroids are often used in things like MS, which are considered 'auto immune' diseases where your body accidentally turns against itself, and the steroids shut down your immune system. That is the exact opposite of what should happen in a bacterial infection, including Lyme.
4 -- You need a doc who understands Lyme, and it sounds like you need a new doc to accomplish that. We have several recent posters here who are in or around Tennessee -- you might post a new message here with a header like "Need LLMD in [central] Tennessee" or "near Memphis" or whatever and see if anyone pops up.
Also try emailing to
contact [at] ilads [dot] org
and tell them where you are and can travel to -- that's the referral function for ILADS, the main voluntary group for Lyme docs.
Don't despair -- you are asking all the right questions, and that is the beginning of finding the right answers. Take care --
No time to give a full answer right now, but just a quick note to say don't despair. I'm not medically trained, but here are my first thoughts:
1 -- Lyme does not cause MS or turn into MS according to everything I have read.
2 -- Docs who do not understand Lyme often use an MRI to diagnose whatever is going on, but because the MRI results can look the same or similar in Lyme as in MS, a doc who 'believes' in MS but not in Lyme will naturally lean heavily toward diagnosing MS. That easily leads to an incorrect diagnosis of MS when you actually have Lyme.
3 -- Lyme is a bacterial infection, which needs your immune system to fight the infection. Steroids are often used in things like MS, which are considered 'auto immune' diseases where your body accidentally turns against itself, and the steroids shut down your immune system. That is the exact opposite of what should happen in a bacterial infection, including Lyme.
4 -- You need a doc who understands Lyme, and it sounds like you need a new doc to accomplish that. We have several recent posters here who are in or around Tennessee -- you might post a new message here with a header like "Need LLMD in [central] Tennessee" or "near Memphis" or whatever and see if anyone pops up.
Also try emailing to
contact [at] ilads [dot] org
and tell them where you are and can travel to -- that's the referral function for ILADS, the main voluntary group for Lyme docs.
Don't despair -- you are asking all the right questions, and that is the beginning of finding the right answers. Take care --
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