posted
My husband had complete memory loss on Aug. 17th of this year from Lyme.He woke up one morning & didn't know me or our son. Everything he knew was gone! After 9 wks of oral and IV antibiotics, it has come back some. Doctors can't tell me if he will ever get it back completely. Has anyone experienced this? I am so scared, overwhelmed, and have no clue where to turn. Any help or suggestions would be greatly appriciated.
Posts: 10 | From Fredericksburg, VA | Registered: Nov 2010
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posted
I have had memory loss but nothing long term . I've woke in the middle of the night for no reason and it takes me a few minutes to figure out where I am .
I can have a really bad day and lose 2 or 3 behind it . but this sounds much more serious .
Have you taken him to his doctor to see what he has to say about it.
I think that's what i would do . I wish you the best and I don't think this would be permanet .
-------------------- Wishing us all well ! Posts: 99 | From Southern Illinois | Registered: Feb 2010
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posted
Thanks for responding. Well, I guess I should start from beginning. My husband started with swollen joints and tested positive in July for Lyme. He was on 3 wks. of doxy and that seemed to help. A week after he finished the doxy he started with lapses in memory. Had an appt. to see doctor and the day of the appt. is when he had total memory loss. We went to the ER and he was admitted to hospital. An infectious disease doctor and neurologist was called in. He had 2 MRI, 2 CT scans, a spinal tap, a battery of bloodwork and other test to check his heart since he has heart disease. Everything came back normal. Completely confusing the doctors. So since he was recently treated for lyme by his primary they started treating him with IV antibiotics. After a blessing from his church and a few days of IV's his memory started to come back. He remembered me and his children. It was bad. I had to teach him how to use utensils to eat and he didn't know how to read, write, colors or numbers. He was so fearful of everything and everyone. I spent every night at the hospital with him and he eventually figured out that I must be a friend because I was always there. It is better but there is still so much that he still doesn't have. He still can't drive and I really believe that some kind of rehab should be done. Just convincing the neurologist of this is the problem. (this is the second one we have seen) What kind of rehab is out there I have no clue so if anyone knows of something please let me know. I am desperate to find something.
Posts: 10 | From Fredericksburg, VA | Registered: Nov 2010
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TX Lyme Mom
Frequent Contributor (1K+ posts)
Member # 3162
posted
What age is your husband? I'm asking because he might be in the age range for a stroke, and this incident might not be related to Lyme at all. Or it could perhaps be related in the sense that he might have developed hypercoagulation with an increased tendency to clotting problems because of Lyme. If he's in the age range for strokes, then these two things could be colliding sequentially.
Bottom Line: Try not to become focused solely on Lyme to the exclusion of all other possible explanations.
Posts: 4563 | From TX | Registered: Sep 2002
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I have never heard of any this bad with memory loss due to Lyme disease, I may be wrong.
There are a lot members here that will get back to you with the right ans...
I hope hes doing better!
Steve
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
scrapn12 I've not been around long enough to give you much advise but I do know that you need a LLMD to treat lyme .
Neuros just don't understand it.
Go to seeking a doctor and post-seeking llmd and your area .
someone will give you some info .
You will be in my prayers BILL
-------------------- Wishing us all well ! Posts: 99 | From Southern Illinois | Registered: Feb 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree completely with Bill. You need to see an LLMD ASAP. Your husband was not adequately treated initially with only three weeks of doxy.
There are co infections that could also be wrecking havoc on his mind. They must be treated with different antibiotics. It takes a very knowledgeable and experienced doctor to determine which infections he has and how best to treat him. Lab tests are not reliable.
Go to the seeking a doctor forum on this site and ask for recommendations. I hope you get the help he needs. This is heart wrenching.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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You can find a ILADS LLMD here , or at Turn The Corner Foundation, (I think).
Let us know how he does.
My memory is coming back. Also , for me, things were tasting weird, smelling weird and gross. That went away with treatment that I got from a LLMD, as well as a lot of my other symptoms are disappearing and being healed.
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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posted
I know that lyme can affect your memory - I think there are issues related to subtle brain swelling - I don't know what would show up on tests and what wouldn't. Many people have memory issues related to Lyme such as not being able to remember/find the words or names they want (I had that problem). When I first had Lyme (onset was sudden, lots of symptoms)I had a lot of memory problems - I watched a movie one night at home with my husband and next night I suggested we see it - didn't know we'd just seen it, didn't remember a thing about it even after watching it again. I didn't have the kind of memory loss your husband is having, but I think the cause is probably the same. I don't know exactly rehab that's available, but I know they do rehab with patients with brain injuries who have problems with memory, language etc. and there are probably similarities. It sounds though that as he's getting better and being treated the memory is coming back, so that's a very good sign. I'll keep thinking good thoughts for him. I know how scary this can be.
Posts: 34 | From Saratoga Springs, NY | Registered: Jun 2008
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posted
It sure sounds like a stroke (though it doesn't sound like they suspect that that's the case).
I guess if he has hypercoagulation, which is common with Lyme and co-infections, blood flow can theoretically get cut off to a portion of the brain causing a clot.
I have hypercoagulation at 24. I would request to have them run all the hypercoagulation/fibrin tests that are available.
Is he or was he on heparin or a similar anticoagulant? If so, do you think the improvements while on IV ABX could be attributed the the anticoagulant?
Quite frankly, if it's a clot (which it very well may be), I think a proper dose of Boluoke Lumbrokinase would work better than Heparin since it actually dissolves the clot. Of course I am not a doctor, and most likely a doctor will not know what it is and would be against it since it is sold at online and at vitamin stores. However Lumbrokinase is performing well in Phase III clinical trials in China. A similar enzyme called serrapeptase is widely used in Japan and is also available at vitamin stores in the US. Lumbrokinase is supposed to be stronger.
If there hasn't been blood flow to an area of the brain for a significant amount of time, it's hard to say how much something like Lumbrokinase would help. If it's given within one month of a stroke clinical studies shown almost complete recovery.
I am not giving medical advice, just some thoughts.
While it could be Lyme, it honestly doesn't sound like it's the cause to me (maybe just a co-factor). Perhaps your husband was already susceptible to a stroke/clot. Perhaps Lyme and/or a co-infection caused a hypercoagulation defect that was the straw that broke the camels back.
I sincerely hope the doctors are looking at the whole picture and are not just focused on an infection. Lyme disease can cause a lot more than just an infection, and everyone is different.
Does your husband have any other symptoms of Lyme Disease? Despite what many people say here, I don't believe Lyme is necessarily a chronic infection in humans unless you have underlying factors that set you up for it.
From my untrained opinion, I think running a SPECT scan may be a lot more useful than running MRIs and CTs over and over again.
For whatever reason, it can be hard to find a doctor that will order it for you (perhaps they aren't used to reading them?). Some areas don't have hospitals that do SPECT imaging.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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posted
Thank you everyone for your responses. Some of you have asked if he maybe had a stroke. He hadn't. It was ruled out. He is 64 and I agree with nefferdun that my husband wasn't treated adequately with the doxy. We thought in the beginning that he must of been bitten a month earlier to the diognosis. Now we know that he probably was bitten much earlier than that. Like I said he is doing better. It hasn't even been 3 months since his memory loss and I guess I should count my blessings that he knows me and his family but I want more for him and I don't want to miss anything that could help him. My husband has been a builder for many years and as I type this he is helping our son build a chicken coop! My husband gets frustrated with the mistakes he is making because he knows that he would of never made them before but I give him a lot of credit for even trying it again! I will put a post out for a LLMD. Thanks for the advice. God Bless
Posts: 10 | From Fredericksburg, VA | Registered: Nov 2010
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quote:Originally posted by scrapn12: Thank you everyone for your responses. Some of you have asked if he maybe had a stroke. He hadn't. It was ruled out. He is 64 and I agree with nefferdun that my husband wasn't treated adequately with the doxy. We thought in the beginning that he must of been bitten a month earlier to the diognosis. Now we know that he probably was bitten much earlier than that. Like I said he is doing better. It hasn't even been 3 months since his memory loss and I guess I should count my blessings that he knows me and his family but I want more for him and I don't want to miss anything that could help him. My husband has been a builder for many years and as I type this he is helping our son build a chicken coop! My husband gets frustrated with the mistakes he is making because he knows that he would of never made them before but I give him a lot of credit for even trying it again! I will put a post out for a LLMD. Thanks for the advice. God Bless
Even if it's not a true stroke, your initial post sounded pretty serious, and in my opinion, hypercoagulation issues need to be checked and addressed. A CT or MRI won't see hypoperfusion from coagulation defects. A SPECT scan can as it shows the blood flow of the brain rather than lesions or structural changes. Lyme doctors will often order SPECT scans, so that's something to keep in mind if the doctor you see doesn't mention it.
Hypercoagulation and hypoperfusion (lack of proper blood flow to brain) is very common with this disease.
Posts: 967 | From A deserted island without internet access | Registered: Sep 2009
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am glad he is a little better and that you are getting him a LLMD for the best treatment.
I have had a lot of memory problems but nothing like what he is experiencing. In a way it is funny because I could watch the same movie several times with just a vague recollection that it was familiar.
One night I realized I had been watching certain TV shows literally for 5 years and had no idea what the names of the main characters were or how the plot progressed.
They have found spirrochetes in the brains of deceased people with dementia. Scary.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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My husband had complete memory loss on Aug. 17th of this year from Lyme.He woke up one morning & didn't know me or our son. Everything he knew was gone! After 9 wks of oral and IV antibiotics, it has come back some. Doctors can't tell me if he will ever get it back completely. Has anyone experienced this? I am so scared, overwhelmed, and have no clue where to turn. Any help or suggestions would be greatly appriciated.
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