Chronic Lyme Disease

[RachelKeeth]

Chronic Lyme Disease is currently denied by many doctors in the US, and in some other countries like Canada. Thankfully more and more doctors are coming to the realization that Chronic Lyme Disease does exist and that those suffering from it are not just "trying to get attention". Sadly due to the government not admitting it is real (of the people on the board to decide if it is a real condition, most of them are paid by insurance companies or people with patents on Lyme) it is hard for anyone to get diagnosed or treated.

Last year I discovered I had Chronic Late Stage Lyme Disease. There are no good LLMDs (Lyme Literate Medical Doctors) in my area and I would have to travel out of state to see one. Thankfully even with my doubting I would have any success, the Lord has helped me create my own treatment plan that is working! I get all my medicines at Vitamin Shoppe, including several natural antibiotics. Due to my Lyme getting to the late stages before I knew what I had I may never be able to completely get rid of it (it has already affected my brain) but with the Lord's help I can continue to make progress.

This forum is for all things Chronic Lyme related. If you have questions about Chronic Lyme Disease please ask, the truth needs to get out! Chronic Lyme Disease is also a lot more common than people would like to believe, but due to doctors not diagnosing it many people are commonly misdiagnosed with MS, various types of arthritis, "trying to get attention", and many other conditions. I personally know several friends and relatives who have been diagnosed and others who are "mysteriously ill" and seem to have Lyme disease as well.

If you would like to see what Chronic Lyme Disease is like, learn about the controversy, and see how large of a problem it is you should watch Under Our Skin for free on Hulu or on Netflix Instant View.

 

[farouk]

Chronic Lyme Disease is currently denied by many doctors in the US, and in some other countries like Canada. Thankfully more and more doctors are coming to the realization that Chronic Lyme Disease does exist and that those suffering from it are not just "trying to get attention". Sadly due to the government not admitting it is real (of the people on the board to decide if it is a real condition, most of them are paid by insurance companies or people with patents on Lyme) it is hard for anyone to get diagnosed or treated.

Last year I discovered I had Chronic Late Stage Lyme Disease. There are no good LLMDs (Lyme Literate Medical Doctors) in my area and I would have to travel out of state to see one. Thankfully even with my doubting I would have any success, the Lord has helped me create my own treatment plan that is working! I get all my medicines at Vitamin Shoppe, including several natural antibiotics. Due to my Lyme getting to the late stages before I knew what I had I may never be able to completely get rid of it (it has already affected my brain) but with the Lord's help I can continue to make progress.

This forum is for all things Chronic Lyme related. If you have questions about Chronic Lyme Disease please ask, the truth needs to get out! Chronic Lyme Disease is also a lot more common than people would like to believe, but due to doctors not diagnosing it many people are commonly misdiagnosed with MS, various types of arthritis, "trying to get attention", and many other conditions. I personally know several friends and relatives who have been diagnosed and others who are "mysteriously ill" and seem to have Lyme disease as well.

If you would like to see what Chronic Lyme Disease is like, learn about the controversy, and see how large of a problem it is you should watch Under Our Skin for free on Hulu or on Netflix Instant View.

Hi Rachel:

Sorry about your condition; but sounds like you are getting some reasonable treatment.

You mentioned Under Our Skin; does it kind of affect the skin, maybe influence the jewelry people can or can't wear; make it susceptible to reaction to tanning in the sun, and so forth; maybe influence ability to receive tattoos; etc. I know a bit about skin issues, from personal experience, though it sounds quite different from what I really know about, anyway.

Blessings.

 

[RachelKeeth]

Thank you! It is hard, but the Lord has done so much through this that I would never want to change it.

The documentary is titled Under Our Skin because a lot of people are affected by Lyme but hide it, also because many people don't realize that Lyme is "under their skin". It can affect the skin though, many people will get strange rashes. I actually have had one on my face for over a month now.

Lyme can attack all areas of the body, brain, muscle, bone, joint, skin, etc.

 

[farouk]

Thank you! It is hard, but the Lord has done so much through this that I would never want to change it.

The documentary is titled Under Our Skin because a lot of people are affected by Lyme but hide it, also because many people don't realize that Lyme is "under their skin". It can affect the skin though, many people will get strange rashes. I actually have had one on my face for over a month now.

Lyme can attack all areas of the body, brain, muscle, bone, joint, skin, etc.

Rachel:

Keep praying and trusting!

You said about jewelry, so I guess you can still wear some? Does the condition affect going out into the sun, maybe? It's known that the sun can also affect one's tattoos if one is not careful. Do you know if the condition can affect getting tattoos, as well?

Blessings.

 

[RachelKeeth]

Rachel:

Keep praying and trusting!

You said about jewelry, so I guess you can still wear some? Does the condition affect going out into the sun, maybe? It's known that the sun can also affect one's tattoos if one is not careful. Do you know if the condition can affect getting tattoos, as well?

Blessings.

I can still wear any jewelry I want, though often when I feel bad I don't deal with it. I have not heard of it affecting wearing jewelry or tattoos, though I guess it could with some people. The only problem I could think of with the tattoos is that if your nerve pain is already really bad getting a tattoo could be a lot more painful than it is for most people.

 

[farouk]

I can still wear any jewelry I want, though often when I feel bad I don't deal with it. I have not heard of it affecting wearing jewelry or tattoos, though I guess it could with some people. The only problem I could think of with the tattoos is that if your nerve pain is already really bad getting a tattoo could be a lot more painful than it is for most people.

Rachel:

Well, at least you can still wear your jewelry, when you want to; I reckon this is often kind of important for women especially, who have the condition. The stuff you hear about earring allergies is possibly not directly connected to the condition anyway, right? though I don't strictly know. You're probably right as well about getting tattoos; if, like you say, your nerve pain is already affected, then the tattoo needle would hardly improve it, though as with all tattoos, including faith based designs, it's so often whether the motive of those getting them proves stronger than the anticipated discomfort; in any case, there would be good advice at a parlor; and of course they often use numbing creams, as well, nowadays.

Blessings.

 

[RachelKeeth]

I do think that it does help women wit Lyme. So often we don't feel like ourselves due to the Lyme or just feel horrible so being able to put a little makeup or earrings on can help us mentally feel somewhat better. Yeah, I don't think they are connected, but it could be for some people with Lyme. The Lyme spirochete attacks different people differently.

It's good they have some numbing creams now, because I imagine it must hurt! Maybe I am associating too much pain to it though, because I feel a lot of pain by touch I might expect it to hurt more than it would for a normal person. Often times if I just rub my arm or leg, or gently bump something I can be in massive pain where I can't even talk, and I have a high pain level. It does not always do it though so I think sometimes the nerves are just giving me more problems.

 

[farouk]

I do think that it does help women wit Lyme. So often we don't feel like ourselves due to the Lyme or just feel horrible so being able to put a little makeup or earrings on can help us mentally feel somewhat better. Yeah, I don't think they are connected, but it could be for some people with Lyme. The Lyme spirochete attacks different people differently.

It's good they have some numbing creams now, because I imagine it must hurt! Maybe I am associating too much pain to it though, because I feel a lot of pain by touch I might expect it to hurt more than it would for a normal person. Often times if I just rub my arm or leg, or gently bump something I can be in massive pain where I can't even talk, and I have a high pain level. It does not always do it though so I think sometimes the nerves are just giving me more problems.

Rachel:

Yes, kind of reminds me of God beautifying Zion in Ezekiel 16 with earrings, skins etc. Like you say, kind of helps to hide discomfort underneath, maybe.

Depends a lot on the tattoo placement, as well, of course, and whether your condition affects all skin areas equally, right? The numbing creams are pretty effective usually, anyway, for the first hours. A good parlor would be able to advise, anyhow.

Blessings.

 

[RachelKeeth]

Yeah, that's true. I find that my inner elbow does not tend to have bad nerve pain, which also means I tend to pinch myself really hard there when I am stressed or in a lot of pain and it does not hurt as badly. Yeah, I know it is not good to pinch myself like that but I often don't realize I am doing it, and it helps with the real pain. I never see myself getting a tattoo though, I have a more classic style and tattoos don't really go with that. ;)

 

[farouk]

Yeah, that's true. I find that my inner elbow does not tend to have bad nerve pain, which also means I tend to pinch myself really hard there when I am stressed or in a lot of pain and it does not hurt as badly. Yeah, I know it is not good to pinch myself like that but I often don't realize I am doing it, and it helps with the real pain. I never see myself getting a tattoo though, I have a more classic style and tattoos don't really go with that. ;)

Rachel:

Interesting that you should mention that area; the inner arm and especially wrist is very popular with first-timers, especially women. I kind of guessed that the condition wouldn't necessarily affect the whole skin equally; and while for example a small and tasteful inked wrist design with a Bible ref. etc. is sometimes an alternative to the widespread WWJD bracelet worn there, you yourself must of course know what your own preferences, (un)conventionalities and tastes are.

Blessings.

 

[tim-from-pa]

Chronic Lyme Disease is currently denied by many doctors in the US, and in some other countries like Canada. Thankfully more and more doctors are coming to the realization that Chronic Lyme Disease does exist and that those suffering from it are not just "trying to get attention". Sadly due to the government not admitting it is real (of the people on the board to decide if it is a real condition, most of them are paid by insurance companies or people with patents on Lyme) it is hard for anyone to get diagnosed or treated.

Last year I discovered I had Chronic Late Stage Lyme Disease. There are no good LLMDs (Lyme Literate Medical Doctors) in my area and I would have to travel out of state to see one. Thankfully even with my doubting I would have any success, the Lord has helped me create my own treatment plan that is working! I get all my medicines at Vitamin Shoppe, including several natural antibiotics. Due to my Lyme getting to the late stages before I knew what I had I may never be able to completely get rid of it (it has already affected my brain) but with the Lord's help I can continue to make progress.

This forum is for all things Chronic Lyme related. If you have questions about Chronic Lyme Disease please ask, the truth needs to get out! Chronic Lyme Disease is also a lot more common than people would like to believe, but due to doctors not diagnosing it many people are commonly misdiagnosed with MS, various types of arthritis, "trying to get attention", and many other conditions. I personally know several friends and relatives who have been diagnosed and others who are "mysteriously ill" and seem to have Lyme disease as well.

If you would like to see what Chronic Lyme Disease is like, learn about the controversy, and see how large of a problem it is you should watch Under Our Skin for free on Hulu or on Netflix Instant View.

Hate to say this, but I have a hunch the reason the doctors and government authorities not admitting it is real is because even with extensive treatment, there is not the money made there as with the useless junk medicines they put out such as cholesterol meds, high BP meds, diabetes meds, depression meds, and you name it. I think there's been a conspiracy lately to "lower the numbers" so that EVERYONE has at least one of these conditions. But there's not enough people with chronic Lyme's to make the same type of money.

What you said reminds me of a woman at church who has the condition as well. She's doing well and looks well using similar things you mention so keep up the good work! I'm a big advocate of supplements of all kinds. Lyme's is very common here in the township, and both my boys had it years ago. A few develop the chronic condition as antibiotics don't always get it all. (I suspected I had Lymes when I had Bell's Palsy last year, but 2 tests showed negative and I felt very well otherwise, didn't miss work or anything--- I had the condition before as a youth from Shingles, so something there may have just flared up again)

 

[RachelKeeth]

Hate to say this, but I have a hunch the reason the doctors and government authorities not admitting it is real is because even with extensive treatment, there is not the money made there as with the useless junk medicines they put out such as cholesterol meds, high BP meds, diabetes meds, depression meds, and you name it. I think there's been a conspiracy lately to "lower the numbers" so that EVERYONE has at least one of these conditions. But there's not enough people with chronic Lyme's to make the same type of money.

Actually there are many people with Chronic Lyme, much more than they admit

The problem is that it costs hundreds of thousands to treat Chronic Lyme disease and insurance companies (which pay people off) would lose a lot of money if chronic Lyme Disease was accepted by the government. The purple are the reported cases and the greenish is the estimated amount.

Another problem is many people don't even know they have Lyme before it gets chronic, because less than 50% of people get the rash. I saw about one park ranger who had the tick, the rash, and knew when he was bitten but no doctor would diagnose him with Lyme and so it became chronic. There is also a problem with the common Lyme test, it only tests for a few strains out of a lot (I can't remember the exact number, but I believe it is at least 100). It also does not test well, I know one girl who has chronic Lyme and she had to be tested 7 times until she got a positive. Thankfully there are some LLMDs who will treat you by your symptoms because they know the test is so faulty.

 

[Mike S]

I live in the heart of Lyme disease country, not all that many miles from the town that gave the disease it's name. My wife and I are pulling ticks - including the small deer ticks - off each other and our dog constantly. The dog has been treated twice for Lyme disease.

I've been dealing with chronic disabling joint pain for months, pain I'm very suspicious is related to Lyme disease. I've been tested several times, always with a negative test result, but am aware, as you mention, that the usual tests are for only three of the most common strains. A specialist I'm seeing now, when questioned, tells me if the cause was Lyme disease I would have had other detectable symptoms before reaching this level of joint pain, and has diagnosed my condition as Palandromic Rheumatism. I know that this type of periodic joint pain is an immune system response to a trigger, yet to be determined. I trust my doctor...but still. Might that trigger actually be Lyme disease.

 

[RachelKeeth]

I live in the heart of Lyme disease country, not all that many miles from the town that gave the disease it's name. My wife and I are pulling ticks - including the small deer ticks - off each other and our dog constantly. The dog has been treated twice for Lyme disease.

I've been dealing with chronic disabling joint pain for months, pain I'm very suspicious is related to Lyme disease. I've been tested several times, always with a negative test result, but am aware, as you mention, that the usual tests are for only three of the most common strains. A specialist I'm seeing now, when questioned, tells me if the cause was Lyme disease I would have had other detectable symptoms before reaching this level of joint pain, and has diagnosed my condition as Palandromic Rheumatism. I know that this type of periodic joint pain is an immune system response to a trigger, yet to be determined. I trust my doctor...but still. Might that trigger actually be Lyme disease.

Your doctor is actually wrong about having other detectable symptoms prior to this pain. LLMDs agree that Chronic Lyme can be undetectable and if it is triggered by something will start attacking the body, sometimes over years sometimes over weeks. I would highly suggest watching Under Our Skin. My chronic Lyme started out with bad fatigue then one day it started attacking my brain and out of the blue I got really sick. I was in bed for three days with ear plugs and wrapped in a blanket because I couldn't handle sound or touch. You might want to find an LLMD to help you. This is a better Lyme test if you want to look into it. Also if you want to know what I do to treat my Chronic Lyme I could easily post it here.

 

[RachelKeeth]

This is an amazing story of a young woman with chronic Lyme and her husband. They are Christians and it is beautiful how much they trust in the Lord and support each other through this terribly difficult time. Worth the time to watch it!

[video=youtube;So2K68r8pOY]http://www.youtube.com/watch?v=So2K68r8pOY[/video]

 

[Gordon]

I watched a lot of that video you posted. Is your condition that severe? That would be horrible to be in such pain you pass out and then have people wonder if you are faking

 

[RachelKeeth]

I watched a lot of that video you posted. Is your condition that severe? That would be horrible to be in such pain you pass out and then have people wonder if you are faking

No, mine is pretty bad but her's is a lot worse. I have had a time for a couple weeks I had such bad migraines that hurt so much that when I stood up I would almost pass out, and I considered standing up more so I would of passed out (it seemed better at the time), but thankfully I have not done that in several months. My pain usually is at a level I can deal with.

 

[farouk]

No, mine is pretty bad but her's is a lot worse. I have had a time for a couple weeks I had such bad migraines that hurt so much that when I stood up I would almost pass out, and I considered standing up more so I would of passed out (it seemed better at the time), but thankfully I have not done that in several months. My pain usually is at a level I can deal with.

Rachel:

So sorry; keep praying, trusting and keeping doc appointments, also, of course.

Blessings.

 

[RachelKeeth]

Rachel:

So sorry; keep praying, trusting and keeping doc appointments, also, of course.

Blessings.

Thank you so much! The Lord has encouraged me so much in this time. I also am thankful that I have improved a lot in less than a year of treatment.

 

[farouk]

Thank you so much! The Lord has encouraged me so much in this time. I also am thankful that I have improved a lot in less than a year of treatment.