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MOTHER IN LAW 2 + YEARS TREATING AND STILL REALLY SICK.
My mother in law has been fighting thsi lyme disease for 2.5 years and still is not doing good at all.She lives in ohio and i travel with her once a month to Pennsylvania to see her specalist....no doctor's are really lyme literate in Ohio....they say it is like winning the lottery if you contract it in Ohio...but this is not true more and more cases are popping up all over!! she has tried so many orals and now i am going to her home once a week on saturdays and giving her the pcn injections.....these do not seem to help either.....I know her western blot did not come back positive but this is because she was seen in the er with her symptoms and they treated her with steroids and abx. The speaclist says that is normal for test to come back negative??? and also they did draw spinal fluid and it was very cloudy. she sees Dr.Joseph in hermitage, PA and she swears by him. also when she was trying to get a diagnosis she was a very heavy drinker and all of a sudden drinking made her very,very ill!!! and this is also a sign of Lyme. So she is ready to give up on this struggle!!! I am at a lost for words because I simply have not gone through this before at all......I am goijbg to give her this website and get her a log in so she can keep in touch with everyone who has this disease just so she can tey and cope a little better.
Has she been tested for coinfections that often come with Lyme? Bartonella, babesiosis, and a few others. They often need meds other than those effective in Lyme. I had babesiosis, and it was pretty bad.
While some LLMDs treat with IV, it's far from universal. My very experienced LLMD treated me with oral abx only, and I was quite sick.
ILADS [dot] org is a great resource, and esp since you are medically trained, the treatment guidelines there would be useful to you. I don't recall penicillin being referenced as a useful med in Lyme+, but I wasn't looking for it; that of course doesn't mean it's not useful. Some MDs have pet theories that maybe work out or maybe don't, and being aware of what the wider world is doing can be useful for the patients.
While some LLMDs treat with IV, it's far from universal. My very experienced LLMD treated me with oral abx only, and I was quite sick.
ILADS [dot] org is a great resource, and esp since you are medically trained, the treatment guidelines there would be useful to you. I don't recall penicillin being referenced as a useful med in Lyme+, but I wasn't looking for it; that of course doesn't mean it's not useful. Some MDs have pet theories that maybe work out or maybe don't, and being aware of what the wider world is doing can be useful for the patients.
yes I mean Penicillin sorry I used the medical abv. for it.....He has told her she is one of the more difficult cases to treat and wanted to try something different on her......I know her insurance will not cover iv abx. but I think this is what it might come down to.....i am sure that would run thousand's for her.....she is already spending way to much on everything else!! I figure if she has it done at a hospital she could get put on a monthly payment plan...I mean people do not even pay their medical bills half h=the time in a hospital so I am sure they will be happy with anything right??? ttyl.
Your MIL is lucky to have you looking out for her. As a nurse, you would know far better than I what the medical considerations are.
When you say she is getting "pcn" injections, is that penicillin? I don't think that's part of a usual treatment regimen, as if anything is 'usual' in regard to Lyme. If you have not already, I strongly suggest reading Dr Burrascano's treatment guidelines at ILADS [dot] org. As a medical prof, you will understand them better than I, I am sure.
Was your MIL tested for coinfections? Those can be worse than the Lyme itself, I think. Looking back, I think I got Lyme in 2004 and just sort of muddled along feeling lousy but not terribly ill until I got bitten again in 2006 and got babesiosis (like malaria) and was very very sick. Then last year I got bitten again, and this time got Ehrlichiosis, which has its own set of miseries, but not as bad as the babesiosis. And of course there's Lyme washing around in the background.
What a mess, huh? Let us know how we can help. This is a good group of people here.
Best, J.
When you say she is getting "pcn" injections, is that penicillin? I don't think that's part of a usual treatment regimen, as if anything is 'usual' in regard to Lyme. If you have not already, I strongly suggest reading Dr Burrascano's treatment guidelines at ILADS [dot] org. As a medical prof, you will understand them better than I, I am sure.
Was your MIL tested for coinfections? Those can be worse than the Lyme itself, I think. Looking back, I think I got Lyme in 2004 and just sort of muddled along feeling lousy but not terribly ill until I got bitten again in 2006 and got babesiosis (like malaria) and was very very sick. Then last year I got bitten again, and this time got Ehrlichiosis, which has its own set of miseries, but not as bad as the babesiosis. And of course there's Lyme washing around in the background.
What a mess, huh? Let us know how we can help. This is a good group of people here.
Best, J.
I agree a 2nd opinion may be wise......I was just worried becuase she kept having elevated white blood cell counts....I have no doubts she has lyme but being a nurse I know this can be a sign of cancer....I just worry becuase my husband is an only child and i know he would be devstated to lose his mother!! I try to help as much as I can as I know she is having a very rough time but with my busy schedule it is really hard...She was always a strong willed person before this....always did everything on her own and never asked for help.....I gave her this website to go to so she can read everyones stories and maybe this would help her along the road of recovery from Lyme. She is not real good with the postings but she will def. read everyones stories.....thanks for reading my post.
and PS
a second opinion never hurts.
Lyme diagnosis and treatment is wild and woolly currently, because there are not yet USEFUL established guidelines. So called mainstream medicine simply denies Lyme as anything serious and persisting, so all the other MDs left out there trying to help their patients sometimes follow odd courses of action, since no one yet knows the one true and correct approach.
The Penn. MD you are seeing may be fine, but doesn't hurt to confirm his approach with another MD. Esp if your MIL isn't doing well.
a second opinion never hurts.
Lyme diagnosis and treatment is wild and woolly currently, because there are not yet USEFUL established guidelines. So called mainstream medicine simply denies Lyme as anything serious and persisting, so all the other MDs left out there trying to help their patients sometimes follow odd courses of action, since no one yet knows the one true and correct approach.
The Penn. MD you are seeing may be fine, but doesn't hurt to confirm his approach with another MD. Esp if your MIL isn't doing well.
I'm sorry to hear about your mother in law's situation, and give you big points for looking out for her.
There may well be LLMDs in Ohio that you just haven't located yet -- they often keep their heads down and names out of the papers to avoid hassle from the local medical board.
A couple of quick points (I'm not an MD, but here's my read):
-- steroids are not good in Lyme, because Lyme is a bacterial infection and steroids just suppress the immune system trying to fight the bacteria.
-- spinal fluid is not usually a good indicator of Lyme disease.
-- a careful history and tests for Lyme and other diseases carried by the same ticks should likely be done
I would suggest that you go to a Lyme-oriented website and use the MD referral function there to find an LLMD you and your MIL are comfortable with, if for nothing else a second opinion.
ILADS [dot] org would be my first stop.
also: truthaboutlymedisease [dot] com
also: chroniclymedisease [dot] com
there are also Lyme groups and MDs in the Chicago area, but don't know if you are on the other side of Ohio from Chicago. you can google 'chicago lyme' and get a bunch of hits.
I would strongly suggest that you not give up trying to get to an LLMD for treatment. Lyme doesn't just go away by itself. Unfortunately.
Thank you for posting here. Your MIL is lucky to have you.
There may well be LLMDs in Ohio that you just haven't located yet -- they often keep their heads down and names out of the papers to avoid hassle from the local medical board.
A couple of quick points (I'm not an MD, but here's my read):
-- steroids are not good in Lyme, because Lyme is a bacterial infection and steroids just suppress the immune system trying to fight the bacteria.
-- spinal fluid is not usually a good indicator of Lyme disease.
-- a careful history and tests for Lyme and other diseases carried by the same ticks should likely be done
I would suggest that you go to a Lyme-oriented website and use the MD referral function there to find an LLMD you and your MIL are comfortable with, if for nothing else a second opinion.
ILADS [dot] org would be my first stop.
also: truthaboutlymedisease [dot] com
also: chroniclymedisease [dot] com
there are also Lyme groups and MDs in the Chicago area, but don't know if you are on the other side of Ohio from Chicago. you can google 'chicago lyme' and get a bunch of hits.
I would strongly suggest that you not give up trying to get to an LLMD for treatment. Lyme doesn't just go away by itself. Unfortunately.
Thank you for posting here. Your MIL is lucky to have you.
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