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Anyone taken Bicillin then become depressed?
Yesterday had my first injection of Bicillin and am really down today. Also was anxious earlier today.
Not sure if it is the Bicillin or just concern over whether it will help. Also looking for another LLMD that might have some thoughts on whether I have ACA with Lyme Disease or something else is causing major fat loss throughout body and face.
Went to Mayo Clinic in Jacksonville to eliminate other "things" this could be. All the doctors told me was I have lipodystrophy, but they didn't give a reason for it. And, of course, the infectious disease doctor deeply explained how I couldn't have Lyme Disease, based on CDC standards. And, she added, IGenex testing "always" comes out positive and the company is under investigation for it. Mainstream doctors just don't seem to get it.
On the brighter side, the Bicillin shot, which I had heard was so miserable to get, wasn't that bad. Just a little sore, but I iced before the injection, massaged right after and put a heating pad on area of injection. Then I walked a lot.
Just with the fat loss and it being so rare, I continue to worry this is something else. But with the positives on my Western Blot and nothing else showing up, don't know what else it could be.
I wish all well for everyone. .
Not sure if it is the Bicillin or just concern over whether it will help. Also looking for another LLMD that might have some thoughts on whether I have ACA with Lyme Disease or something else is causing major fat loss throughout body and face.
Went to Mayo Clinic in Jacksonville to eliminate other "things" this could be. All the doctors told me was I have lipodystrophy, but they didn't give a reason for it. And, of course, the infectious disease doctor deeply explained how I couldn't have Lyme Disease, based on CDC standards. And, she added, IGenex testing "always" comes out positive and the company is under investigation for it. Mainstream doctors just don't seem to get it.
On the brighter side, the Bicillin shot, which I had heard was so miserable to get, wasn't that bad. Just a little sore, but I iced before the injection, massaged right after and put a heating pad on area of injection. Then I walked a lot.
Just with the fat loss and it being so rare, I continue to worry this is something else. But with the positives on my Western Blot and nothing else showing up, don't know what else it could be.
I wish all well for everyone. .
I answered (sorta) your question about leptin on your other thread.
Conflicting information about leptin will be what you get on the Internet. It's treatment has not been resolved yet but many people think they know how to treat it regardless. Perhaps some do but I'll wait and see.
I've been reading about leptin for many years now.
Leptin resistance is interesting too.
Conflicting information about leptin will be what you get on the Internet. It's treatment has not been resolved yet but many people think they know how to treat it regardless. Perhaps some do but I'll wait and see.
I've been reading about leptin for many years now.
Leptin resistance is interesting too.
Sorry, I'm no help on leptin.
Have you tried increasing your fat intake? Of course that would be healthy fats and in the context of a healthy, balanced diet.
Have you tried increasing your fat intake? Of course that would be healthy fats and in the context of a healthy, balanced diet.
Since it seems I hear form the same group of helpful people each time I post a question, I will ask this here.
I had my leptin levels checked while at Mayo, and they came back low. I had read that is another indication of Lyme Disease, but then I read high levels are.
Anyone know the truth on this? I find conflicting information.
Thanks- Murphgolf
I had my leptin levels checked while at Mayo, and they came back low. I had read that is another indication of Lyme Disease, but then I read high levels are.
Anyone know the truth on this? I find conflicting information.
Thanks- Murphgolf
Hey ,
Bicillin still seems to be helping. Took that first full 2.5 mill dose after slowly coming up. Like Ricobord, feel bad the next day but better after that, though I've been tired today. That could be from getting leaves up in yard.
Butt hurt a bit more this time, but shots aren't a biog deal to me. My LLMD wants me to start cyst buster next week. We'll see how that works out soon.
Hope you both are feeling pretty well. I'm also talking about, possibly, getting fillers because my face is really getting that sunken, "I've got a disease " look. I announce running races, so looking sick is not a great way to keep business. At the same time, I'm not trying to roll back the clock on looks, only get back to looking my age. But I have to see if there would be a negative impact. I've read both sides of it.
Have a good night.
Murphgolf
Bicillin still seems to be helping. Took that first full 2.5 mill dose after slowly coming up. Like Ricobord, feel bad the next day but better after that, though I've been tired today. That could be from getting leaves up in yard.
Butt hurt a bit more this time, but shots aren't a biog deal to me. My LLMD wants me to start cyst buster next week. We'll see how that works out soon.
Hope you both are feeling pretty well. I'm also talking about, possibly, getting fillers because my face is really getting that sunken, "I've got a disease " look. I announce running races, so looking sick is not a great way to keep business. At the same time, I'm not trying to roll back the clock on looks, only get back to looking my age. But I have to see if there would be a negative impact. I've read both sides of it.
Have a good night.
Murphgolf
May the bicillin you're taking work like mine did! That's the best thing I could wish for a Lyme patient------ unless they won the lottery also,
I had almost no pain from the shots.
The day of each of my shots never produced anything other than the feeling that I'd been jabbed in the rear---- really minor. So I never had the cyclic feelings that Rico did. All good, all the way
After the initial depression and maybe somewhat of a herx when I first started bicillin I did nothing but continue to feel better. Slowly? Yep. But surely.
I had almost no pain from the shots.
The day of each of my shots never produced anything other than the feeling that I'd been jabbed in the rear---- really minor. So I never had the cyclic feelings that Rico did. All good, all the way
After the initial depression and maybe somewhat of a herx when I first started bicillin I did nothing but continue to feel better. Slowly? Yep. But surely.
I'm so glad you're feeling better on the Bicillin! I did, too, and I'm considering stopping the Rocephin and going back to it. Not quite ready to pull the trigger, though. My coinfections are confusing the situation.
When I was on Bicillin, initially I would feel horrible for a day after the shot. Then I'd start to feel a little better until I got back up to par, and then it was time for another shot. Within a couple months it got to the point that I was "craving" the next shot. It sounds like you're already there!
It's cheaper than IV meds, too. In hindsight, I quit them too soon. If I go back on them, I'll stay on them until I'm essentially symptom free.
When I was on Bicillin, initially I would feel horrible for a day after the shot. Then I'd start to feel a little better until I got back up to par, and then it was time for another shot. Within a couple months it got to the point that I was "craving" the next shot. It sounds like you're already there!
It's cheaper than IV meds, too. In hindsight, I quit them too soon. If I go back on them, I'll stay on them until I'm essentially symptom free.
I had a medication make me very depressed. It depends on each individual as to their response. My LLMD chose to increase the antidepressant which worked. Your LLMD might do that or change the medication.
"Each person has brought a perspective and experience to this that has been helpful and appreciated."
Well said! Do you work in PR? LOL
Well said! Do you work in PR? LOL
I've been asked who has the best answer to this question. I find that an easy question because they all are best answers.
Each person has brought a perspective and experience to this that has been helpful and appreciated.
Each answer lends to more knowledge or a new view. So, to all of you, "best answer." Congratulations :)
The Bicillin has helped me feel better. I know because I have felt more energy and focus until today. My medicine is a day late due to an order problem, and I can feel it. Cave mentioned how well it made her feel and how bad she felt off of it. I get that. And that tells me this must be Lyme Disease. And from reading what doctors have to say, I believe a cyst buster is in order and have emailed my doctor about it.
Do I rely just on this site for answers? No. But you sure are a tremendous mental help. ALl of you.
Murph
Each person has brought a perspective and experience to this that has been helpful and appreciated.
Each answer lends to more knowledge or a new view. So, to all of you, "best answer." Congratulations :)
The Bicillin has helped me feel better. I know because I have felt more energy and focus until today. My medicine is a day late due to an order problem, and I can feel it. Cave mentioned how well it made her feel and how bad she felt off of it. I get that. And that tells me this must be Lyme Disease. And from reading what doctors have to say, I believe a cyst buster is in order and have emailed my doctor about it.
Do I rely just on this site for answers? No. But you sure are a tremendous mental help. ALl of you.
Murph
well, that's what I get for trying to do three things at once.
The last paragraph above should say:
"If someone truly cannot afford the full price, many docs will give a reduction to those truly in need. Times are hard for a lot of people right now, so it's don't ask for a lower rate just to save some money for this year's trip to the Bahamas."
As in: if you are *really* hurting, tell the doc and ask the doc for payment terms or a break on the billing rates -- and then when times are good again, think about sending the doc a check for the difference, so the doc can keep helping others who may be even worse off than you are.
The last paragraph above should say:
"If someone truly cannot afford the full price, many docs will give a reduction to those truly in need. Times are hard for a lot of people right now, so it's don't ask for a lower rate just to save some money for this year's trip to the Bahamas."
As in: if you are *really* hurting, tell the doc and ask the doc for payment terms or a break on the billing rates -- and then when times are good again, think about sending the doc a check for the difference, so the doc can keep helping others who may be even worse off than you are.
And PS about doc's fees:
You say: 'Another side I have seen is many of the best LLMDs out there are un-affordable for many people. I have looked into so many, and the costs blew me away. Is it because the market demands it?"
If someone truly cannot afford the full price, many docs will give a reduction to those truly in need. Times are hard for a lot of people right now, so it's not a favor to be asked lightly just to save some money for this year's trip to the Bahamas.
You say: 'Another side I have seen is many of the best LLMDs out there are un-affordable for many people. I have looked into so many, and the costs blew me away. Is it because the market demands it?"
If someone truly cannot afford the full price, many docs will give a reduction to those truly in need. Times are hard for a lot of people right now, so it's not a favor to be asked lightly just to save some money for this year's trip to the Bahamas.
" The irony is in the end, the system that is trying to save money not treating Lyme Disease "
That is, indeed, an irony! And one most of us have been through. I know I was---- and it was partly MY fault, in the beginning.
Although I may seem to have some knowledge about Lyme and it's pervasiveness ---- don't for one minute think I 'knew' that from the beginning!
With some variations your thoughts were my thoughts back in the beginning. And, again with variations, the same as most of the newcomers here.
I delayed treatment, and not ONLY because of doctors that wouldn't treat for Lyme. Oh, no! I could NOT for the life of me understand how all my symptoms (and believe me, I had tons of really awful ones) could be the result of Lyme. And I was mentored by two women that were much more knowledgeable than anyone here!
I obfuscated. I waffled. I said "but why". I said 'but how?'. In other words, I was doing almost exactly the same thing you're doing. :)
Now, I don't know if the ONLY thing you have is Lyme-----but 'what íf?"
Antibiotics are not the devil's spawn.
And I don't know if you are depending on this forum only for information about Lyme or if you're reading articles elsewhere written by experts/doctors/researchers. There's so many excellent articles out there don't limit yourself.
Bit by bit it can come down to "it has to be Lyme"---- the only thing that might make sense for your symptoms and because no one can find anything else wrong with you.
I won't tell you that you have Lyme and how to treat it ---- I can't and I won't----- but 'what if?'.
That is, indeed, an irony! And one most of us have been through. I know I was---- and it was partly MY fault, in the beginning.
Although I may seem to have some knowledge about Lyme and it's pervasiveness ---- don't for one minute think I 'knew' that from the beginning!
With some variations your thoughts were my thoughts back in the beginning. And, again with variations, the same as most of the newcomers here.
I delayed treatment, and not ONLY because of doctors that wouldn't treat for Lyme. Oh, no! I could NOT for the life of me understand how all my symptoms (and believe me, I had tons of really awful ones) could be the result of Lyme. And I was mentored by two women that were much more knowledgeable than anyone here!
I obfuscated. I waffled. I said "but why". I said 'but how?'. In other words, I was doing almost exactly the same thing you're doing. :)
Now, I don't know if the ONLY thing you have is Lyme-----but 'what íf?"
Antibiotics are not the devil's spawn.
And I don't know if you are depending on this forum only for information about Lyme or if you're reading articles elsewhere written by experts/doctors/researchers. There's so many excellent articles out there don't limit yourself.
Bit by bit it can come down to "it has to be Lyme"---- the only thing that might make sense for your symptoms and because no one can find anything else wrong with you.
I won't tell you that you have Lyme and how to treat it ---- I can't and I won't----- but 'what if?'.
My Lyme doc ran a small office -- he was the main doc, with another doc who might have been less of a specialist than he was, but I'm not sure, since I never met the other doc. There was a receptionist and a billing person, maybe one more person (nurse?) doing things, but it was a small office. The hourly charge was, iirc, $350, and the office didn't take insurance, to avoid hassles and the expense of a platoon of billing clerks to fight with the insurance companies.
A doc can't do all the reading and learning and staying up with the latest information, or do any research or writing of his/her own, and still work and bill patients 8 hours/day. Even if the doc could bill $350/hour for 8 hours a day, for 11 months a year (to allow for holidays and a short vacation), the gross income for the practice is $616,000 per year.
To allow for the doc's research time, travel to Lyme-related conferences and symposia, then round the gross income down to $500,000/year. Out of that, office rent has to be paid, each nurse/helper makes on average (guessing here) $60,000/year.
$500,000 gross minus (3 nurse/assistants x $60,000 = $180,000) = $320,000 to cover travel, research time, income taxes, and the doc's salary. I think the nurse/helper number at $60,000 per person is low, given employer taxes, health insurance (probably provided) etc., and so the $320,000 is probably high by $100,000. Bottom line: the doc's not getting rich.
But back to your approach to dealing with Lyme. May I be blunt? I would focus on eliminating Lyme as a cause of your misery. It's the elephant in the living room, and until you deal with it, it's still sitting there sipping tea and nibbling muffins. There's no way to eliminate Lyme as a possibility without dealing with it. In the meantime, you're spending money to rule out a bunch of other things, and if you get to the point that Lyme is the only ailment still possible, then will you still have the funds to make the cure happen?
I am a grand master at 'study-avoidance mechanisms' -- when I should have been studying for a history exam the next day, suddenly the laundry needed doing, and so on. Well, I had clean clothes to wear to the exam, but the whole object of being there was undermined, because I would have done better on the test if I had studied more.
I still have those tendencies, and they work REALLY well. (This website is definitely one of them.) But Murph, consider that it's time to face Lyme head on and either rule it out once and for all, or deal with it.
Not knowing is far worse than knowing, and once you know what is really going on, then you can move forward to deal with it. And you'll still have the funds to pay for treatment and then take a well-earned vacation.
Denial ain't just a river in Egypt, as the saying goes.
Now go get well!
A doc can't do all the reading and learning and staying up with the latest information, or do any research or writing of his/her own, and still work and bill patients 8 hours/day. Even if the doc could bill $350/hour for 8 hours a day, for 11 months a year (to allow for holidays and a short vacation), the gross income for the practice is $616,000 per year.
To allow for the doc's research time, travel to Lyme-related conferences and symposia, then round the gross income down to $500,000/year. Out of that, office rent has to be paid, each nurse/helper makes on average (guessing here) $60,000/year.
$500,000 gross minus (3 nurse/assistants x $60,000 = $180,000) = $320,000 to cover travel, research time, income taxes, and the doc's salary. I think the nurse/helper number at $60,000 per person is low, given employer taxes, health insurance (probably provided) etc., and so the $320,000 is probably high by $100,000. Bottom line: the doc's not getting rich.
But back to your approach to dealing with Lyme. May I be blunt? I would focus on eliminating Lyme as a cause of your misery. It's the elephant in the living room, and until you deal with it, it's still sitting there sipping tea and nibbling muffins. There's no way to eliminate Lyme as a possibility without dealing with it. In the meantime, you're spending money to rule out a bunch of other things, and if you get to the point that Lyme is the only ailment still possible, then will you still have the funds to make the cure happen?
I am a grand master at 'study-avoidance mechanisms' -- when I should have been studying for a history exam the next day, suddenly the laundry needed doing, and so on. Well, I had clean clothes to wear to the exam, but the whole object of being there was undermined, because I would have done better on the test if I had studied more.
I still have those tendencies, and they work REALLY well. (This website is definitely one of them.) But Murph, consider that it's time to face Lyme head on and either rule it out once and for all, or deal with it.
Not knowing is far worse than knowing, and once you know what is really going on, then you can move forward to deal with it. And you'll still have the funds to pay for treatment and then take a well-earned vacation.
Denial ain't just a river in Egypt, as the saying goes.
Now go get well!
I share those concerns about our healthcare system and how it will be impacted by the new laws. There is always the inevitable "belt tightening" when projected costs go much higher than expected or announced. And the last thing we need is even tighter rules on treating Lyme Disease.
Another side I have seen is many of the best LLMDs out there are un-affordable for many people. I have looked into so many, and the costs blew me away. Is it because the market demands it? Because they need that much to risk their ability to practice? Because we have no other choice? Don't know - only understand the costs are beyond my ability at this time.
So, I have continued looking to eliminate other disease or problems instead of using those funds and insurance to try and treat Lyme Disease. The irony is in the end, the system that is trying to save money not treating Lyme Disease spend it on tests that show nothing, such as when I've had atrial fib.and palpitations, frequent urination that has led to PSA, prostate and UTI. That's just two examples.
Makes for an entire cluster any way we look, from my viewpoint
Another side I have seen is many of the best LLMDs out there are un-affordable for many people. I have looked into so many, and the costs blew me away. Is it because the market demands it? Because they need that much to risk their ability to practice? Because we have no other choice? Don't know - only understand the costs are beyond my ability at this time.
So, I have continued looking to eliminate other disease or problems instead of using those funds and insurance to try and treat Lyme Disease. The irony is in the end, the system that is trying to save money not treating Lyme Disease spend it on tests that show nothing, such as when I've had atrial fib.and palpitations, frequent urination that has led to PSA, prostate and UTI. That's just two examples.
Makes for an entire cluster any way we look, from my viewpoint
"I also don't think it is out of fear of losing a medical licence [that docs are so dismissive of Lyme]."
I dunno about that ... it takes a leap of faith for a doc to begin making life/death/quality-of-life decisions about patients, and because so much of medicine is obscure and specialized, the docs tend to cling in packs adhering to 'received wisdom' from other specialists. Straying from established diagnoses and approaches puts a doc out on an ethical and legal limb.
Lyme doesn't fit neatly into any category, nor did AIDS, and that was part of the confusion when AIDS first arose. It was outside the established paradigm, as is Lyme.
Docs are a herd trying not to do anything wrong, but in the process can overlook things that a different mindset would not -- and thus end up inadvertently doing harm.
One fear I have of Obamacare is that the LLMDs will be pressured to no longer practice according to conscience, but according to govt guidelines -- and that means the IDSA's guidelines. It can be difficult now to get insurance companies to reimburse for some Lyme treatments ... and once the Feds have their medical cookbook of permitted treatments set forth, there may well be no reimbursement for any Lyme treatment outside the IDSA 'guidelines.'
Would that a bunch of docs who are non-believers in Lyme would volunteer to be infected with Lyme and a few co-infections (just to keep things interesting) and then follow their own diagnostic and treatment approaches. What a difference that would make --
I dunno about that ... it takes a leap of faith for a doc to begin making life/death/quality-of-life decisions about patients, and because so much of medicine is obscure and specialized, the docs tend to cling in packs adhering to 'received wisdom' from other specialists. Straying from established diagnoses and approaches puts a doc out on an ethical and legal limb.
Lyme doesn't fit neatly into any category, nor did AIDS, and that was part of the confusion when AIDS first arose. It was outside the established paradigm, as is Lyme.
Docs are a herd trying not to do anything wrong, but in the process can overlook things that a different mindset would not -- and thus end up inadvertently doing harm.
One fear I have of Obamacare is that the LLMDs will be pressured to no longer practice according to conscience, but according to govt guidelines -- and that means the IDSA's guidelines. It can be difficult now to get insurance companies to reimburse for some Lyme treatments ... and once the Feds have their medical cookbook of permitted treatments set forth, there may well be no reimbursement for any Lyme treatment outside the IDSA 'guidelines.'
Would that a bunch of docs who are non-believers in Lyme would volunteer to be infected with Lyme and a few co-infections (just to keep things interesting) and then follow their own diagnostic and treatment approaches. What a difference that would make --
After the last two years, and in particular the past 6 months, I totally agree it seems to be a waste of time and $$ going to all the specialists and other doctors. I don't blame them for being so ignorant about Lyme Disease - it was drilled into their heads. And I also don't think it is out of fear of losing a medical licence. There is a true arrogance with most doctors when it comes to knowledge about Lyme Disease and how to treat it. This is how they all have been taught, and it seems a personal experience is whta changes a doctor's thoughts.
I like your comment calling it "constant weeing." That's putting it appropriately. And it is draining ( that's my joke for how it feels :)
Since starting the Bicillin shots, I do feel better in some ways. A bit more energy. Over did it yesterday as my kids had cross country meets yesterday, and I stayed all day to watch races. That included running fast (which I haven't done for a while) to get to different points on the course. It felt great to run (AT ONE TIME I was a big runner nationally for my age group in the 800 and 1500). Just running fast yesterday felt so good, if even for a 100 or so yards at a time, but I paid for it with knee pain and felt like I was getting sick last night. I'd do it again, though.
The fat problems continue as I still am losing fat and some hair on my head. Guess I'll just be skinny and deal with it. Just trying to stop the progression.
Your comments are well thought out and show an understanding of this Lyme stuff. I hope yours is under control and your days are good - better- best - - - tolerable. Everyone on this site is appreciated. Going on line is like going to a place where people "get" you.
I like your comment calling it "constant weeing." That's putting it appropriately. And it is draining ( that's my joke for how it feels :)
Since starting the Bicillin shots, I do feel better in some ways. A bit more energy. Over did it yesterday as my kids had cross country meets yesterday, and I stayed all day to watch races. That included running fast (which I haven't done for a while) to get to different points on the course. It felt great to run (AT ONE TIME I was a big runner nationally for my age group in the 800 and 1500). Just running fast yesterday felt so good, if even for a 100 or so yards at a time, but I paid for it with knee pain and felt like I was getting sick last night. I'd do it again, though.
The fat problems continue as I still am losing fat and some hair on my head. Guess I'll just be skinny and deal with it. Just trying to stop the progression.
Your comments are well thought out and show an understanding of this Lyme stuff. I hope yours is under control and your days are good - better- best - - - tolerable. Everyone on this site is appreciated. Going on line is like going to a place where people "get" you.
I went through a fair amount of testing, too, and no doc could find anything else wrong with me. I did have evidence of problems, though. My non-LLMDs just couldn't pin them on anything. To someone who understands all that Lyme can do, however, my condition just screams, "LYME!"
It's a good thing to come to a point of peace about a Lyme diagnosis, instead of feeling a constant stress that maybe its something else. I finally got to that point, and have absolutely no doubt about what infections I have.
I got to that point when my MS specialist wanted me to see a rheumatologist and ID doc at the same prestigious research hospital. I didn't have any rheumatic symptoms, and I'd already read awful stories about how anti-Lyme the ID docs are at this hospital, so I was a nervous wreck about going to see them.
I realized I didn't have to go see them and that in fact, it could be counter productive if any of them called my GP and planted doubt in her mind (she believed me at that point, and still does) about Lyme. Deciding that there was no benefit in seeing these docs or undergoing further testing was liberating.
P.S. As a European who used to frequent this forum humorously called it, I also have had "constant thirst and massive weeing." I think it's attributed to Lyme messing with the hormone control center. Our body's management of water is controlled by a hormone. If the kidneys don't get enough, they don't process water and concentrate urine properly. An extreme form of this is called Diabetes Insipidus. On my first 24 hour creatinine test, I nearly filled up the huge jug they give you, and I'm not a large person. That got better with antibiotics.
Are you feeling any better yet? I seem to recall you've had it a long time.
It's a good thing to come to a point of peace about a Lyme diagnosis, instead of feeling a constant stress that maybe its something else. I finally got to that point, and have absolutely no doubt about what infections I have.
I got to that point when my MS specialist wanted me to see a rheumatologist and ID doc at the same prestigious research hospital. I didn't have any rheumatic symptoms, and I'd already read awful stories about how anti-Lyme the ID docs are at this hospital, so I was a nervous wreck about going to see them.
I realized I didn't have to go see them and that in fact, it could be counter productive if any of them called my GP and planted doubt in her mind (she believed me at that point, and still does) about Lyme. Deciding that there was no benefit in seeing these docs or undergoing further testing was liberating.
P.S. As a European who used to frequent this forum humorously called it, I also have had "constant thirst and massive weeing." I think it's attributed to Lyme messing with the hormone control center. Our body's management of water is controlled by a hormone. If the kidneys don't get enough, they don't process water and concentrate urine properly. An extreme form of this is called Diabetes Insipidus. On my first 24 hour creatinine test, I nearly filled up the huge jug they give you, and I'm not a large person. That got better with antibiotics.
Are you feeling any better yet? I seem to recall you've had it a long time.
We need mainstream doctors to accept our results and give long term abx. My fiancée has a bad case of MRSA and will be on long term abx, why not lymies?
“When you have eliminated the impossible, whatever remains, however improbable, must be the truth.”
~Sherlock Holmes or his doppleganger, Sir Arthur Conan Doyle.
All good points and comments. It's like having a Lyme Disease party online without any of it being fun.
Been doing a lot of thinking. And here's what it seems to boil down to: No doctor, "no way, no how," (best line in "Wizard of Oz") has found anything else wrong in my body. Extensive imaging, blood tests, biopsies, poking, etc... No positive tests fopr HIV, syphilis, meningitis, TB, cancers, colon problems, bladder problems (despite VERY frequent urination), no tumors, no anything, EXCCEPT Lyme Disease, but not by CDC standards, which aren't true standards at all. Positive IGenex Western Blot for IgM on bands 30, 31, IND on 34, 41 66. And band 30 is considered to represent European Lyme Disease, or could.
So, despite the negative skin biopsy a while back for ACA, I am still left there, or with straight Lyme Disease, as Jackie C mentions. In some ways, I wish the biopsy checking for CA would have been positive. Would have made things cleaner.
All of you are so much appreciated. Your comments, thoughts, ideas and knowledge are appreciated, Without this site, I would be more of a basket case than I already am. Thanks.
Murphgolf
Been doing a lot of thinking. And here's what it seems to boil down to: No doctor, "no way, no how," (best line in "Wizard of Oz") has found anything else wrong in my body. Extensive imaging, blood tests, biopsies, poking, etc... No positive tests fopr HIV, syphilis, meningitis, TB, cancers, colon problems, bladder problems (despite VERY frequent urination), no tumors, no anything, EXCCEPT Lyme Disease, but not by CDC standards, which aren't true standards at all. Positive IGenex Western Blot for IgM on bands 30, 31, IND on 34, 41 66. And band 30 is considered to represent European Lyme Disease, or could.
So, despite the negative skin biopsy a while back for ACA, I am still left there, or with straight Lyme Disease, as Jackie C mentions. In some ways, I wish the biopsy checking for CA would have been positive. Would have made things cleaner.
All of you are so much appreciated. Your comments, thoughts, ideas and knowledge are appreciated, Without this site, I would be more of a basket case than I already am. Thanks.
Murphgolf
I have seem many pictures of very skinny late stage Lyme patients. I think the fat loss is not all that rare. (In a small way, I wish I'd had that problem. My fat cells are apparently quite the survivors.) Be sure you keep your nutrition up and eat healthy calorie dense food. Keep a food diary if you have to, to make sure you're getting enough intake. If your appetite is really suppressed you might not even realize you're not eating enough.
I noticed small, steady improvement on Bicillin. I didn't have to wait months, I saw it within a couple weeks. But everybody is different. While I noticed benefit quickly, my progress was still slower than I had expected. But then perhaps my expectations were too high. I'm also turning out to be difficult to treat.
Sorry, but I can't remember... have you been evaluated for Bartonella? Skin manifestations are often a result of Bartonella. If your skin issues don't start improving on the Bicillin, then perhaps some Rifampin would make a difference. (You can test false negative for Bartonella, too.)
I noticed small, steady improvement on Bicillin. I didn't have to wait months, I saw it within a couple weeks. But everybody is different. While I noticed benefit quickly, my progress was still slower than I had expected. But then perhaps my expectations were too high. I'm also turning out to be difficult to treat.
Sorry, but I can't remember... have you been evaluated for Bartonella? Skin manifestations are often a result of Bartonella. If your skin issues don't start improving on the Bicillin, then perhaps some Rifampin would make a difference. (You can test false negative for Bartonella, too.)
You say above: "I'm still having trouble, in a small way, that this is Lyme Disease because of the fat loss."
Because Lyme is or may be a cause of ACA, I would not focus on the usual symptoms of Lyme. There is medical literature indicating that Lyme is the cause of ACA, or (to say it another way) that ACA is a manifestation of Lyme disease.
I just searched -- acrodermatitis chornica atrophicans lyme -- and got many hits discussing the link or relationship of the two ailments.
ACA may not be a common presentation of Lyme, but that does not rule out a link. Rather than focus on Lyme separately from ACA, I would find a Lyme specialist who also understands ACA -- kill two birds with one stone.
If they are indeed related, then going to an ACA doc who doesn't believe in Lyme may not get you very far very fast, so I would work from the other end of the equation: start with a Lyme doc who knows ACA rather than an ACA doc who doesn't 'believe' in Lyme and so sees no link.
ILADS referral service may be able to provide your with a name of such a doc, dunno.
Because Lyme is or may be a cause of ACA, I would not focus on the usual symptoms of Lyme. There is medical literature indicating that Lyme is the cause of ACA, or (to say it another way) that ACA is a manifestation of Lyme disease.
I just searched -- acrodermatitis chornica atrophicans lyme -- and got many hits discussing the link or relationship of the two ailments.
ACA may not be a common presentation of Lyme, but that does not rule out a link. Rather than focus on Lyme separately from ACA, I would find a Lyme specialist who also understands ACA -- kill two birds with one stone.
If they are indeed related, then going to an ACA doc who doesn't believe in Lyme may not get you very far very fast, so I would work from the other end of the equation: start with a Lyme doc who knows ACA rather than an ACA doc who doesn't 'believe' in Lyme and so sees no link.
ILADS referral service may be able to provide your with a name of such a doc, dunno.
Hit reply too fast!
Or read the CDCs statement about how long a tick has to be attached before it can transmit Lyme.
" In most cases, the tick must be attached for 36-48 hours or more before the Lyme disease bacterium can be transmitted."
Good 'save'---- ' in most cases'. :)
Or read the CDCs statement about how long a tick has to be attached before it can transmit Lyme.
" In most cases, the tick must be attached for 36-48 hours or more before the Lyme disease bacterium can be transmitted."
Good 'save'---- ' in most cases'. :)
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