Aa
Being broke must be a death sentance
I have diagnosed myself with Chronic Lyme disease. I have absolutely no idea how long I have had it, but it seems to be effecting my brain. LLMD's do not take medicaid and I cannot afford them! I went to a random doctor for the first time in decades, and told him my suspicions. He then ordered an ELISA because there was apparently no other options. It's been over a week and I haven't heard anything so I suppose it was negative. I can't stand doctors! Why? Because everything always comes back normal! What happens when blood work comes back normal? I get dismissed. I don't play!! I don't enjoy hanging out at a doctors office like some people do. So I'm considering starting my own treatment. Does anyone have a medical treatment protocall they got from an LLMD? It would be MUCH cheaper to order my own antibiotics online than it would trying to get a proper diagnoses. I highly doubt that a regular doctor would even consider 2 or 3 years worth of antibiotics anyways.
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
The antibiotics for Lyme should knock out any co-infections too wouldn't they?
Thanks!
Wow I'm sorry your daugher had to go through that! She's lucky to have you there for her though. I've been scared of herxing. I haven't experienced it yet and I'm sure everyone herxes differently, so I'm really not sure what to expect. The InterFase Plus that I'm taking has EDTA in it. IDK how effective that may be at binding the metals but I haven't experienced any adverse effects from it. I'm not sure if I'm taking enough. The recommended dose is 2~8 a day spread out between meals and I'm taking 3 and sometimes 6. I figure there's no sense maxing out on it. I have issues with taking pills too. I'm considering working my way up on the dosage though. Thanks for the advice! Keep me updated on that!
hi, all!
I've not had a chance to get back to this forum til now because I've been doing research day & nite for weeks. Yes, "the crawling on the floor" from pain was definitely from herxing. It is so irresponsible of a reputable lyme doctor to give shots & then send a single young woman home, where she's by herself, to suffer in such horrendous pain, for weeks! (of course she asked for pain meds...nothing). My daughter has a high tolerance for pain & is a high achiever. When"positive thinking" tries to think away the pain, it becomes unrealistic. And when she let us, her parents know this, a year later, we were mortified. So, now...contrary to what is normally said or done, I take care of her treatment myself, with her approval, of course).
Remember, we went to Sierra Integrative in 2005 & spent a fortune on tests. I don't have that money now. Dr. Forrest of "forresthealth.com" is close to us in CA, & I consult with him & order through him. I cannot afford, either, to take all of these tests, but I have the proof of what she tested with in the past.
This may be objectionable to some, but I made up my own written test. The websites I have been on that discuss the different symptoms of the different co-diseases were my impetus. I had my daughter rate her pain levels on a scale of 0-5 (5 being horrible pain). I typed out a form where she could check off her pain levels from the top of her head to the bottoms of her feet. I included emotions, fears, nightmares, OCD, ADD, (not ADHD she wrote), suicidal thoughts, amount of time she could concentrate, anything i could find on Dr. Wayne Anderson's website (and others) that described all the symptoms that pertained to lyme & the nasty co-infections. She wrote down more than what I had. My shock was when she divided the check list in half: Say it was "4/5" for headaches. She clarified that the pain was a 4 some of the time, but a 5 maybe 3 times a week, & it lasted for an hour. By time I got done reading her list, I was ..... sick.
BUT! After all my studying of websites & blogs & forums & reviews, I was able to make the connection of serious heavy metal toxins. She doesn't want to take 20 different pills a day, so we've decided to start with the obvious,heavy metals & as she improves, attack the Bartonella with A-BART from Byron White Formulas etc. I am VERY impressed with Biofilam's website & reviews of it's brown seaweed, "Biofilam". Getting rid of heavy metals is dicey, because breaking up the biofilms causes some of the metals to be reabsorbed BACK into your system, as if you were getting it for the first time! THAT'S a scary thought! But "Biofilam" info & reviews state that the seaweed surrounds the poisons & take it out of your body with NO side effects. I am excited to try this product & will let you know how she progresses. I am so sad to see how hard a time each one of you has in your endeavors to get some answers to this disease.
Take care,
chatteycathi~
I've not had a chance to get back to this forum til now because I've been doing research day & nite for weeks. Yes, "the crawling on the floor" from pain was definitely from herxing. It is so irresponsible of a reputable lyme doctor to give shots & then send a single young woman home, where she's by herself, to suffer in such horrendous pain, for weeks! (of course she asked for pain meds...nothing). My daughter has a high tolerance for pain & is a high achiever. When"positive thinking" tries to think away the pain, it becomes unrealistic. And when she let us, her parents know this, a year later, we were mortified. So, now...contrary to what is normally said or done, I take care of her treatment myself, with her approval, of course).
Remember, we went to Sierra Integrative in 2005 & spent a fortune on tests. I don't have that money now. Dr. Forrest of "forresthealth.com" is close to us in CA, & I consult with him & order through him. I cannot afford, either, to take all of these tests, but I have the proof of what she tested with in the past.
This may be objectionable to some, but I made up my own written test. The websites I have been on that discuss the different symptoms of the different co-diseases were my impetus. I had my daughter rate her pain levels on a scale of 0-5 (5 being horrible pain). I typed out a form where she could check off her pain levels from the top of her head to the bottoms of her feet. I included emotions, fears, nightmares, OCD, ADD, (not ADHD she wrote), suicidal thoughts, amount of time she could concentrate, anything i could find on Dr. Wayne Anderson's website (and others) that described all the symptoms that pertained to lyme & the nasty co-infections. She wrote down more than what I had. My shock was when she divided the check list in half: Say it was "4/5" for headaches. She clarified that the pain was a 4 some of the time, but a 5 maybe 3 times a week, & it lasted for an hour. By time I got done reading her list, I was ..... sick.
BUT! After all my studying of websites & blogs & forums & reviews, I was able to make the connection of serious heavy metal toxins. She doesn't want to take 20 different pills a day, so we've decided to start with the obvious,heavy metals & as she improves, attack the Bartonella with A-BART from Byron White Formulas etc. I am VERY impressed with Biofilam's website & reviews of it's brown seaweed, "Biofilam". Getting rid of heavy metals is dicey, because breaking up the biofilms causes some of the metals to be reabsorbed BACK into your system, as if you were getting it for the first time! THAT'S a scary thought! But "Biofilam" info & reviews state that the seaweed surrounds the poisons & take it out of your body with NO side effects. I am excited to try this product & will let you know how she progresses. I am so sad to see how hard a time each one of you has in your endeavors to get some answers to this disease.
Take care,
chatteycathi~
If you're asking about the thread about double vision---- it's here on MH at:
http://www.medhelp.org/posts/Lyme-Disease/Double-vision/show/1941489
But I'll put it here also:
"Here's something to consider if a person has double vision (whether caused by Lyme or not)
When I saw a neuro-opthamologist in NM he rx'd new glasses with prisms in one lens. For some reason that didn't work for me but I'm sure it must for some.
But then he put a Fresnel lens over my regular eyeglasses (with a change in the rx) and it worked!!! Double vision gone while wearing glasses----and for driving it's REALLY important. (grin)
They are thin press-on plastic Fresnel lenses that can be cut to fit your eyeglasses (usually done to see if a more expensive prism will work.) Have you seen those 'full sheet magnifiers' offered in some catalogs? Same thing, only thinner and better.
Although some might fret over the fact that they are (minimally) visible I don't mind them at all and I've never had anyone say---- what the heck is that!! (Just read that some one thought that Hilary Clinton is wearing a Fresnel lens)
They're inexpensive and any good opthamologist will fit you with them. And you don't even have to mention Lyme. (grin)"
http://www.medhelp.org/posts/Lyme-Disease/Double-vision/show/1941489
But I'll put it here also:
"Here's something to consider if a person has double vision (whether caused by Lyme or not)
When I saw a neuro-opthamologist in NM he rx'd new glasses with prisms in one lens. For some reason that didn't work for me but I'm sure it must for some.
But then he put a Fresnel lens over my regular eyeglasses (with a change in the rx) and it worked!!! Double vision gone while wearing glasses----and for driving it's REALLY important. (grin)
They are thin press-on plastic Fresnel lenses that can be cut to fit your eyeglasses (usually done to see if a more expensive prism will work.) Have you seen those 'full sheet magnifiers' offered in some catalogs? Same thing, only thinner and better.
Although some might fret over the fact that they are (minimally) visible I don't mind them at all and I've never had anyone say---- what the heck is that!! (Just read that some one thought that Hilary Clinton is wearing a Fresnel lens)
They're inexpensive and any good opthamologist will fit you with them. And you don't even have to mention Lyme. (grin)"
That's what I was kinda thinking Ricobord. I was hoping it may improve with treatment but at the same time they seemed expensive at the optic place and insurance will only pay for the cheapest ones once a year. I'll have to look around. Right now my visions been on a steady decline and I was seriously worried about going blind. I'm already night blind. Not so much light sensitive though. I have 100 watt light bulbs blaring in the house. Otherwise I can hardly see. I have floaters too and only sometimes double vision.
Where can I find the thread? I'm still sorta new here.
Thanks!
Where can I find the thread? I'm still sorta new here.
Thanks!
I just put a new thread up about 'double vision' for anyone suffering from it.
It's my experience with it and how my ophthalmologist helped with it.
It's my experience with it and how my ophthalmologist helped with it.
Lyme can cause blurry spots in vision that mimic astigmatism. I thought my astigmatism was getting worse, and I got new lenses. Now that I'm well into treatment, I need to get new lenses again, probably the same prescription I had before.
The downside of getting new lenses is that your vision can change fairly quickly with Lyme. The author of "Cure Known" said she didn't want the cost of frequent lens changes and so she accumulated a collection of reading glasses of various strengths and used whichever one helped the most at any given time. I've seen reading glasses at a Dollar store so you can get them really cheap, if they help. If you need new lenses for distance, especially for driving, then definitely get those. You want to be safe.
I also had light sensitivity and three different kinds of floaters, so keep an eye out for them, too. (He He. Pun intended.)
The downside of getting new lenses is that your vision can change fairly quickly with Lyme. The author of "Cure Known" said she didn't want the cost of frequent lens changes and so she accumulated a collection of reading glasses of various strengths and used whichever one helped the most at any given time. I've seen reading glasses at a Dollar store so you can get them really cheap, if they help. If you need new lenses for distance, especially for driving, then definitely get those. You want to be safe.
I also had light sensitivity and three different kinds of floaters, so keep an eye out for them, too. (He He. Pun intended.)
Yes dreamsnake, that's what I'm saying. It's hard for some people to truly understand. It really is a toss up between feeding my kids what they want and treatment but at the same time, I keep getting bombarded with the importance of healthy eating with this disease. Is it really that important? Because I can't afford it! Especially with treatment! I've already begun a herbal approach and I have to say, I don't know how long I can afford this route either. It gets expensive!! I am so tempted to order my own prescription medicine now that I know what to order, you have no idea. The medications I need are soooooo much cheaper but all this counterfeit talk has got me thinking. I've ordered many medications from this company and they all worked as expected. So IDK. If the medications don't have the appropriate levels and rather just enough to feel the effects, I'd have resistance to deal with. I have an appointment in Oct with an LLMD if I live that long. And luckily she accepts payments. Of course, I worry about my kids too! I hate having to put myself first but I seriously feel like I'm about to croak. They seem fine and healthy but there are a few signs in them as well. I really don't know how I would afford all three of us! They don't have a father in their life and I don't have a husband or a wife.
As far as I know LymeTap will help with some of the Lyme associated lab testing but nothing more. Any little bit helps though!
Thanks for the advice cave 76!
I just found out I have an astigmatism, could that be from Lyme? I've always had perfect eyesight until about 8 months ago and it's been declining ever since about the same time my health began its rapid decline.
As of now I'm taking Interface Plus; Allmax prepro but probably not for long as it's expensive; Nattokinase; MSM; Prescription Bactrim I've had and the amoxicillin I got from the dentist. I'm debating Lactoferrin, Berberine, and CoQ10. I'm aiming more towards biofilm busters at this point. Otherwise nothing else will take effect. This stuff is all over my hair and skin. I can see under magnification and it's thick! I can't imagine what my insides must be like. Hopefully I can get the dosage right. The more I take the quicker I'll have to buy more but I want to take enough to be effective without getting real sick either. I'll fit Cats claw in after I rid some of this biofilm stuff. I have other ailments other than the typical Lyme/co infections to deal with too.
As far as I know LymeTap will help with some of the Lyme associated lab testing but nothing more. Any little bit helps though!
Thanks for the advice cave 76!
I just found out I have an astigmatism, could that be from Lyme? I've always had perfect eyesight until about 8 months ago and it's been declining ever since about the same time my health began its rapid decline.
As of now I'm taking Interface Plus; Allmax prepro but probably not for long as it's expensive; Nattokinase; MSM; Prescription Bactrim I've had and the amoxicillin I got from the dentist. I'm debating Lactoferrin, Berberine, and CoQ10. I'm aiming more towards biofilm busters at this point. Otherwise nothing else will take effect. This stuff is all over my hair and skin. I can see under magnification and it's thick! I can't imagine what my insides must be like. Hopefully I can get the dosage right. The more I take the quicker I'll have to buy more but I want to take enough to be effective without getting real sick either. I'll fit Cats claw in after I rid some of this biofilm stuff. I have other ailments other than the typical Lyme/co infections to deal with too.
I just searched on google for
michigan lyme
and there were quite a few hits for patient groups and other sources of information.
I also am aware that there are some charitable organizations that may help pay for Lyme treatment. One is called LymeTAP ... and the other one I don't remember. Someone posted the names of these orgs here not too long ago, so you might try using the search box up above and search for lymetap, because I'm pretty sure that was in the post I read.
"But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either." Just don't give up!! There are ways. If nothing else, herbal approaches might help.
michigan lyme
and there were quite a few hits for patient groups and other sources of information.
I also am aware that there are some charitable organizations that may help pay for Lyme treatment. One is called LymeTAP ... and the other one I don't remember. Someone posted the names of these orgs here not too long ago, so you might try using the search box up above and search for lymetap, because I'm pretty sure that was in the post I read.
"But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either." Just don't give up!! There are ways. If nothing else, herbal approaches might help.
Lyme is a rich person's disease. If you don't have money, you're screwed. I have the same predicament. Because I can't work anymore, I have to rely on Medicare and disability. My llmd, who took Medicare for many years, no longer does and now I have to pay him double. I try to extend the time between appointments because I have to travel, too.
Also, I started treatment exactly six years ago and there hasn't been much of a change. But I can't afford to collect and borrow all the money I can and see someone on the east coast because what if I pick the wrong doctor? If I could ever do that, I would only have one chance to get it right because I would have to pay for the appointment, room and board...etc. I already tried this six years ago before my husband lost his job and we had savings. I went to a recommended doctor three states away but he didn't treat it aggressively enough, either.
I have never tested positive on elisa. I haven't tested positive on western blot, but I have positive bands. I pee Lyme spirochetes and my cd57 is 10. I had a large bullseye rash in 1999 that my doctor said looked like Lyme but that I couldn't get it in Michigan so he said it was ringworm. I got sick 3 years later and was misdiagnosed until 2007. I made my own diagnosis too and it turns out I was right. But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either.
Also, I started treatment exactly six years ago and there hasn't been much of a change. But I can't afford to collect and borrow all the money I can and see someone on the east coast because what if I pick the wrong doctor? If I could ever do that, I would only have one chance to get it right because I would have to pay for the appointment, room and board...etc. I already tried this six years ago before my husband lost his job and we had savings. I went to a recommended doctor three states away but he didn't treat it aggressively enough, either.
I have never tested positive on elisa. I haven't tested positive on western blot, but I have positive bands. I pee Lyme spirochetes and my cd57 is 10. I had a large bullseye rash in 1999 that my doctor said looked like Lyme but that I couldn't get it in Michigan so he said it was ringworm. I got sick 3 years later and was misdiagnosed until 2007. I made my own diagnosis too and it turns out I was right. But with regular docs not treating Lyme and llmds being so expensive, I don't know what to do either.
The horrible crawling pain you describe sounds like an awful herx. While not everyone herxes, some experience really bad ones. That usually fades with time, so hopefully she didn't write off abx altogether.
I hope your daughter hangs in there with the treatment this time. LLMDs say that you need to keep treating for at least 8 weeks past all symptoms (excepting any permanent damage). Otherwise, the patient usually relapses again. Each time it gets harder to treat. She's a lucky gal that you're there to help her.
I hope your daughter hangs in there with the treatment this time. LLMDs say that you need to keep treating for at least 8 weeks past all symptoms (excepting any permanent damage). Otherwise, the patient usually relapses again. Each time it gets harder to treat. She's a lucky gal that you're there to help her.
There is hope!! I have been caring for my daughter, who was diagnosed when she was 16, with Lyme disease by Sierra Integrative in Nevada. (I'm not even going to list all the years of going to doctors, etc., that mis-diagnosed).It was VERY expensive & painful to treat. She gave up on the treatments after getting relatively better. At 23, she had treatments from a Lyme "specialist" doctor, here in CA. The antibiotics left her in horrible, crawling on the floor pain. That was in October of 2011, she had to quit her job & move in with us. I scoured the internet for a month & came up with Boluoke Lumbrokinaise, Biofilum seaweed, Garlic 6000, Sivercillan, a good probiotic, (I'm using Synergy by Designs by Health), Heel Detox & the Byron White Products. She's back home again because she's 25 & lives the party life, that's totally incompatible with Lyme. We are ready to start treatment again. Diet for 8 weeks: vegetables & meat, homemade soup, protein drink (jay robb, egg white), stevia, honey. No fruit, dairy, grains, potatoes, corn, sugar, etc.
I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
chatteycathi
I am going to use Pekana instead of Heel this time: It's stronger.
Afterwards, I will try to get her to stay on the Blood Type diet We're all type "O", so it's not too hard.
She went from a pain level of "!0" to a "5" in 3 weeks last time she was here. The Byron White Formulas are amazing. Do your research, check out their websites, read the reviews & blogs & you WILL get success!
chatteycathi
Welcome to MedHelp Lyme -- and thanks for your information about funding. May I suggest you start a new thread with a message something like 'Financial assistance for needy Lyme patients' and re-post your information there?
Otherwise it may not be seen by many, buried at the bottom of this chain.
Thanks again.
Otherwise it may not be seen by many, buried at the bottom of this chain.
Thanks again.
Hello ephedra
I'm new to this site but not to Lyme. I'd promised myself that I would just 'lurk' for a while but your financial plight impells me to suggest this-----(maybe I missed this somewhere, so sorry)
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
http://www.needymeds.org/indices/newuser.htm
http://www.patientassistance.com/
Perhaps, after you find a doctor who will treat you, you may find a use for them. (And may that be soon---- I agree with most of the posters here.)
I'm like you---- healthy as a horse (on lab tests). Sick as a dog in real life. Never had a positive Lyme test from Igenex. But after years and years of treating, bicillin IM kicked me into a few years of remission. Please don't take that as saying that bicillin will help YOU or YOU. :) It might or it might not. More than a decade of this crap has shown me that each person will get better in a different way than the next.
I'm new to this site but not to Lyme. I'd promised myself that I would just 'lurk' for a while but your financial plight impells me to suggest this-----(maybe I missed this somewhere, so sorry)
There are patient assistance services for those that can't afford medications. The person still needs a doctor (llmd in the case of Lyme) to sign off on the request.
Not all medications are available but many are. I used Needymeds before Rocephin went generic. The criteria for each drug may be different (whether you can have ins., Medicare, poverty or close to it) so check them out.
Here are the links:
http://www.needymeds.org/indices/newuser.htm
http://www.patientassistance.com/
Perhaps, after you find a doctor who will treat you, you may find a use for them. (And may that be soon---- I agree with most of the posters here.)
I'm like you---- healthy as a horse (on lab tests). Sick as a dog in real life. Never had a positive Lyme test from Igenex. But after years and years of treating, bicillin IM kicked me into a few years of remission. Please don't take that as saying that bicillin will help YOU or YOU. :) It might or it might not. More than a decade of this crap has shown me that each person will get better in a different way than the next.
I wish I had a friend or family member to rely on. I AM quite a bit confused. I get lost in my own city all the time, so I couldn't imagine making it to this doctors office but I'd try. Hopefully I wouldn't be too physically sick if I did arrive. I'm so incredibly sensitive to motion combined with the stress from driving in an unfamiliar territory with high traffic, I can almost count on it but I won't. I'm trying to stay positive! The sickness does get quite intense though. Seeing the doc would probably be another stressor but to a lesser degree than the drive.
Consider lining up a friend or family member to take you into the city when the appointment time comes. Takes the stress off you, and if you're as addled as I was, I was confused a whole lot of the time and had trouble doing even simple things sometimes, never mind an unfamiliar and complex task, topped off with anxiety about seeing the doc. It's a big event, after all.
Oh, I see.
You actually felt a die off? I wonder what that must be like. Sounds awesome!
I've been taking a fairly large dose of Keflex for a week and I don't think I feel any different, so maybe they're not affected by it IDK.
Yeah, I've been taking Adderall for quite a while. I don't feel like begging a doctor for them though, so mine aren't really cheap. They seem to have lost most of their effectiveness but they do get me outta bed and help with my mental status, so that's better than nothing. I'm not going to increase my dose, regardless. It's tempting but I know how addiction works and I don't want it.
I was able to make an appointment with an LLMD and they can't get me in for 6 MONTHS. I can't even imagine what shape I'd be in by then! I'm on my own with this and I'm already worried about the 1.5 hour drive through the big city.
I look forward to recovery though, regardless of how long it may be. I can't remember ever being normal. The last 10 years kinda got away as I didn't realize I was slowly creeping away. The breaking point was when I went on an extremely low dose course of Isotretinoin and POW!! Everything accelerated. It lowered my immune system, allowing the bacteria to thrive but at least now I know. It was confusing at first because I thought I was experiencing side effects of that medication but I didn't understand why as I was only taking 1/3 of the recommended dose.
Thanks!
You actually felt a die off? I wonder what that must be like. Sounds awesome!
I've been taking a fairly large dose of Keflex for a week and I don't think I feel any different, so maybe they're not affected by it IDK.
Yeah, I've been taking Adderall for quite a while. I don't feel like begging a doctor for them though, so mine aren't really cheap. They seem to have lost most of their effectiveness but they do get me outta bed and help with my mental status, so that's better than nothing. I'm not going to increase my dose, regardless. It's tempting but I know how addiction works and I don't want it.
I was able to make an appointment with an LLMD and they can't get me in for 6 MONTHS. I can't even imagine what shape I'd be in by then! I'm on my own with this and I'm already worried about the 1.5 hour drive through the big city.
I look forward to recovery though, regardless of how long it may be. I can't remember ever being normal. The last 10 years kinda got away as I didn't realize I was slowly creeping away. The breaking point was when I went on an extremely low dose course of Isotretinoin and POW!! Everything accelerated. It lowered my immune system, allowing the bacteria to thrive but at least now I know. It was confusing at first because I thought I was experiencing side effects of that medication but I didn't understand why as I was only taking 1/3 of the recommended dose.
Thanks!
Just to clarify, I had herxes when I started a new medication. My doc rotates them regularly as it creates an ongoing attack against the bugs. When my pace of progress would slow, I'd get a new abx. When I started Biaxin at the 6 months mark, I didn't notice any herx. But when I started Clindamycin at the 9 month mark, I had a significant one.
I did Bicillin shots for the better part of a year, and for the first half, I generally felt a die off in the hours after a shot. After a while, I got to crave the next shot, which is when they upped my dose.
And yes, there are many contributors to fatigue. The disease itself, as well as body chemistry imbalances that result. You can ask your doctor for an anti-fatigue medication. Provigil, nuvigil, and adderall are the most commonly prescribed and they usually help. I've been on low dose provigil for well over a year, and it still helps me. It boosts my heart rate, though, so I had to use it sparingly when my tachycardia was too much. Adderall is cheaper and many insurance companies won't cover provigil/nuvigil unless you have narcolepsy. Adderall is addictive, though. But that's still better than not being functional.
I am sorry you're struggling. I know the feeling! You can help your body by eating as healthy as possible, avoiding chemicals, processed foods, and sugar as much as possible. It really does make a difference. Sugar and saturated fat have both been shown to suppress the immune system.
I did Bicillin shots for the better part of a year, and for the first half, I generally felt a die off in the hours after a shot. After a while, I got to crave the next shot, which is when they upped my dose.
And yes, there are many contributors to fatigue. The disease itself, as well as body chemistry imbalances that result. You can ask your doctor for an anti-fatigue medication. Provigil, nuvigil, and adderall are the most commonly prescribed and they usually help. I've been on low dose provigil for well over a year, and it still helps me. It boosts my heart rate, though, so I had to use it sparingly when my tachycardia was too much. Adderall is cheaper and many insurance companies won't cover provigil/nuvigil unless you have narcolepsy. Adderall is addictive, though. But that's still better than not being functional.
I am sorry you're struggling. I know the feeling! You can help your body by eating as healthy as possible, avoiding chemicals, processed foods, and sugar as much as possible. It really does make a difference. Sugar and saturated fat have both been shown to suppress the immune system.
Thanks Ricobord! I've kinda noticed all the secondary possibilities of Lyme just by searching around. If I could only determine the secondary cause of my debilitating fatigue and temporarily fix that then I would be getting much further to Lyme dx and treatment. But it didn't take long to realize that there are so many possibilities and co-possibilities of the fatigue, it's just not possible to make that determination.
I'm deteriorating fast, so sorry if my writing is off or don't make sense. One thing I never wanted to lose is my brain function. I just hope there's enough left to communicate with a doctor or there's going to be some serious issues.
I really don't know where I'm getting calcium from but I must be getting it from somewhere courtesy of my lab values, which revealed me in the upper range. I must be getting plenty of it from cheese, because that's the only real source of calcium I consume. It's not a whole lot though and it's not necessarily on a daily basis either so IDK.
I did google various words concerning 'protruding calvarial cyst' and such years ago but I actually found many possibilities. If I knew for sure what they were, then I may be able to make that connection. I refuse to except that they are calcified cyst. There are so many likewise possibilities, I don't see how they could make that determination just by CT appearance.
You have an interesting history! Which treatment took 9 months to get a herx and how long did that one last? I actually fear herxheimer reactions but at the same time, I'd look forward to it as confirmation that treatment is working - just like you said. I'm the only one my kids have to rely on, so hopefully it's not too rough.
I'm deteriorating fast, so sorry if my writing is off or don't make sense. One thing I never wanted to lose is my brain function. I just hope there's enough left to communicate with a doctor or there's going to be some serious issues.
I really don't know where I'm getting calcium from but I must be getting it from somewhere courtesy of my lab values, which revealed me in the upper range. I must be getting plenty of it from cheese, because that's the only real source of calcium I consume. It's not a whole lot though and it's not necessarily on a daily basis either so IDK.
I did google various words concerning 'protruding calvarial cyst' and such years ago but I actually found many possibilities. If I knew for sure what they were, then I may be able to make that connection. I refuse to except that they are calcified cyst. There are so many likewise possibilities, I don't see how they could make that determination just by CT appearance.
You have an interesting history! Which treatment took 9 months to get a herx and how long did that one last? I actually fear herxheimer reactions but at the same time, I'd look forward to it as confirmation that treatment is working - just like you said. I'm the only one my kids have to rely on, so hopefully it's not too rough.
Good point. "Easing in" to me usually means over a few days, not weeks. But it is still a good idea to mention it to the prescribing doc.
When I was first prescribed Malarone, they forgot to tell me to ease in to it. I took the full dose the first night and the next day around noon my brain and body just shut down. I ended up lying on the floor for 1/2 hour before I could get up with help and stumble to bed for the rest of the day. Before that, the docs told me which things needed to be started slowly. But it only took 1 "oops" for me to take ownership of asking that question!
When I was first prescribed Malarone, they forgot to tell me to ease in to it. I took the full dose the first night and the next day around noon my brain and body just shut down. I ended up lying on the floor for 1/2 hour before I could get up with help and stumble to bed for the rest of the day. Before that, the docs told me which things needed to be started slowly. But it only took 1 "oops" for me to take ownership of asking that question!
I would be careful about easing into ALL meds ... does that are less than lethal to the bacteria gives them a chance to mutate and survive, now immune to the particular antibiotic. I would confirm with the doc how to stage such an approach, or if it is not a good idea, even with significant side effects.
Sorry...don't know anything about calcified cysts. But there are so many secondary and tertiary issues that can come up with a long term Lyme infection, it's probably impossible to list them all. Lyme throws multiple symptoms out of whack, and strange things can happen that aren't really considered Lyme symptoms. I think if I were you, I'd cut back on excess calcium for now. You don't want a shortage, but you might not want supplements either.
What I would do is to google "Lyme" and a word or two describing a symptom. When I learned I had a big liver cyst, I googled "Lyme liver" and learned that there is a relationship. It encouraged me in that it didn't exclude Lyme as the cause of my many symptoms, and also that I didn't have a separate liver condition!
I didn't any wild herxheimer reactions until about 9 months into treatment. My doc starts out slow in order to avoid strong herxes. He doesn't think it helps a patient to make them much sicker. I had a strong pain response to my first Bicillin shot about 6 weeks in. It made my rib pain and stomach pain (two of my top few problems) much worse for a couple days. I could barely walk. Then it eased up and I felt ready for the next shot on the 4th day. It almost made me happy to have a reaction as that meant is was working. "Die, bugs, Die!" became my mantra when I hurt.
I had a significant reaction to Clindamycin, an intracellular abx. It made me feel miserable with malaise, severe fatigue, severe brain fog, headache, inability to focus or even do much of anything. It lasted a bit less than a day, but took several days to fully get out of it.
Later, I had a bad herx when I started Malarone for Babesia. The office forgot to tell me to ease into the dose, so I took 3 pills the first night. The next day, it was like someone shut my brain down. I had about five minutes warning of headache and dizzyness, and then I had to abruptly lie down on the floor. I couldn't get up or speak more than a few words for about a half hour. My husband took one look at me and said, "Did you start a new medication?" I spent the rest of the day in bed like a breathless zombie. I had zero doubt that I had Babesia after that. After that, it took me a month to ease up to the 3 pill dose.
Since then, I ease in to every new med I take, including anti-bacterial supplements, whether I am instructed to or not.
What I would do is to google "Lyme" and a word or two describing a symptom. When I learned I had a big liver cyst, I googled "Lyme liver" and learned that there is a relationship. It encouraged me in that it didn't exclude Lyme as the cause of my many symptoms, and also that I didn't have a separate liver condition!
I didn't any wild herxheimer reactions until about 9 months into treatment. My doc starts out slow in order to avoid strong herxes. He doesn't think it helps a patient to make them much sicker. I had a strong pain response to my first Bicillin shot about 6 weeks in. It made my rib pain and stomach pain (two of my top few problems) much worse for a couple days. I could barely walk. Then it eased up and I felt ready for the next shot on the 4th day. It almost made me happy to have a reaction as that meant is was working. "Die, bugs, Die!" became my mantra when I hurt.
I had a significant reaction to Clindamycin, an intracellular abx. It made me feel miserable with malaise, severe fatigue, severe brain fog, headache, inability to focus or even do much of anything. It lasted a bit less than a day, but took several days to fully get out of it.
Later, I had a bad herx when I started Malarone for Babesia. The office forgot to tell me to ease into the dose, so I took 3 pills the first night. The next day, it was like someone shut my brain down. I had about five minutes warning of headache and dizzyness, and then I had to abruptly lie down on the floor. I couldn't get up or speak more than a few words for about a half hour. My husband took one look at me and said, "Did you start a new medication?" I spent the rest of the day in bed like a breathless zombie. I had zero doubt that I had Babesia after that. After that, it took me a month to ease up to the 3 pill dose.
Since then, I ease in to every new med I take, including anti-bacterial supplements, whether I am instructed to or not.
Wow! Isn't that interesting! Everything you've mentioned fits perfectly! The anxiety and paranoia is unbelievable and the irritability and rage usually has a trigger but it's such a relief to know that all of these things may diminish with treatment. Did you have any wild heximer reactions from the treatments?
I could have had this for much longer than I originally suspected. So can an LLMD can tell from the western blot IgM and/or IgG results approximately how long the infection has been present? Or just chronic vs acute infection? I read that kids can be born with it, so that's concerning.
There is one piece of the puzzle that I cannot seem to tie in with anything. And that's these growing nodules on my head. They've been very slowly growing and multiplying over the past 10 years. I was told they were calcified cyst but I can't seem to wrap my mind around growing calcified cyst. I seen the CT and there are quite a few of them. Even though they appear to be superficial, there must be a cause. They've kind of been growing and multiplying with the gradual decline of my health.
Much thanks Ricobord :)
I could have had this for much longer than I originally suspected. So can an LLMD can tell from the western blot IgM and/or IgG results approximately how long the infection has been present? Or just chronic vs acute infection? I read that kids can be born with it, so that's concerning.
There is one piece of the puzzle that I cannot seem to tie in with anything. And that's these growing nodules on my head. They've been very slowly growing and multiplying over the past 10 years. I was told they were calcified cyst but I can't seem to wrap my mind around growing calcified cyst. I seen the CT and there are quite a few of them. Even though they appear to be superficial, there must be a cause. They've kind of been growing and multiplying with the gradual decline of my health.
Much thanks Ricobord :)
Sorry for the delay in response. I've been out of town.
Regarding your question about panic attacks and not getting along with people, those are both known symptoms of Lyme. Anxiety to the point of panic attacks is documented. Even the doctors in the American Psychiatric Association has published articles and had conference talks on this issue.
There's also "Lyme rage", which can come and go. It's an extreme form of the very common irritability that comes along with Lyme. I've definitely had that. My poor husband and daughter bore the brunt of my irritability when I was at my worst. Irritability & anxiety combined are especially effective at driving other people away from us, not to mention reason for doctors to write us off as psych cases.
I didn't realize that I also had a chronic sense of doom for a few months before treatment until Youvegottobekidding mentioned that she had this as well. I didn't quite realize it was a symptom, although I can't remember if it's from Lyme or Bart. For a couple months I was sure my husband was going to die in an accident everytime he went off to work, which involved travel. I didn't want to tell anyone at the time, as I didn't want to be right. I'm relieved now to know it was caused by the infections, and that I'm not actually a paranoid pessimest.
In my case, the anxiety was from Bartonella. My anxiety dropped way down after a few months of meds for Bart. I luckily tested positive for Bartonella Henselae antibodies at IGeneX.
Regarding your question about panic attacks and not getting along with people, those are both known symptoms of Lyme. Anxiety to the point of panic attacks is documented. Even the doctors in the American Psychiatric Association has published articles and had conference talks on this issue.
There's also "Lyme rage", which can come and go. It's an extreme form of the very common irritability that comes along with Lyme. I've definitely had that. My poor husband and daughter bore the brunt of my irritability when I was at my worst. Irritability & anxiety combined are especially effective at driving other people away from us, not to mention reason for doctors to write us off as psych cases.
I didn't realize that I also had a chronic sense of doom for a few months before treatment until Youvegottobekidding mentioned that she had this as well. I didn't quite realize it was a symptom, although I can't remember if it's from Lyme or Bart. For a couple months I was sure my husband was going to die in an accident everytime he went off to work, which involved travel. I didn't want to tell anyone at the time, as I didn't want to be right. I'm relieved now to know it was caused by the infections, and that I'm not actually a paranoid pessimest.
In my case, the anxiety was from Bartonella. My anxiety dropped way down after a few months of meds for Bart. I luckily tested positive for Bartonella Henselae antibodies at IGeneX.
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I don't think there's an absolute answer to your question, because a short term course of antibiotics can actually help trigger more antibody production as dead spirochetes hit the blood stream. This scenario actually increases antibody production in the immediate term. This is called an antibiotic challenge, done before a Western Blot test, which tries to provoke enough antibodies to show up on the test.
Insufficient courses of antibiotics can leave the tougher-to-kill bugs behind. The spirochetes can hide their surface proteins, which is what the antibodies look for. They curl up into ring forms like a hedgehog curls up in a ball for protection. They also form biofilms to hide in.
In my case, I took insufficient antibiotics when I first got infected. After a week of abx, I got better. Then, I had a relapsing/remitting cycle for nearly 5 years. Once or twice a year I would have "attacks" of severe fatigue, malaise, headache, and loss of appetite. They'd last 1-3 weeks and then go away. The little buggers would go dormant for up to a year! I thought they were relapses of a bad case of mono (epstein barr) from years earlier.
So who knows what effect past courses of antibiotics have had on you. They could certainly interfere with antibody production. Also, Lyme itself can be immunosuppressive. That was the case with me. Twelve to eighteen months ago, I had no allergies, despite a life long history. Blood tests even showed I had no allergies anymore. A general IgM/IgG count showed my immune system was at the low end of "normal." I was really sick with Lyme, Bartonella, and Babesia at that time. My immune system wasn't putting up much of a fight.
This spring, now that Bartonella is gone and Lyme is nearly gone, I am definitely suffering with allergies. Yes, they're back. I am convinced it's because my immune system was suppressed last spring. This year, my immune system is back to overreacting to certain pollens, which is normal for me.
The only doctors familiar with this nightmarish complexity of Lyme are experienced LLMDs. It's rare to find a doctor who isn't clueless about the testing. They trust that the microbiologists who designed the tests and the interpretation know what they're doing. In the case of Lyme, this is a tragically wrong assumption.