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Lyme? And how to treat if unable to work. I need help!!

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Posted 10/23/2018 1:18 AM (GMT -5)
Earlier this year I had awful debilitating symptoms that lasted a few weeks and then I felt ok for a few months. As of about 4 months ago all of my symptoms came back, but even worse than before. Urgent care tested me for Lyme disease and said I didn't have it. Although I never got to see the true results of that test. Then I ened up in the ER and was again tested. On the standard ELISA I tested positive for iGg antibodies. The dr explained that meant "I had Lyme disease, but got over it on my own." I then had the Western Blot done and only tested positive for one band of the three which "wasn't enough. Therefore I don't have Lyme disease." The band that was reactive was the 23 kd IGm which I heard is Lyme specific! All of my symptoms point to Lyme. I've been to the ER 4 times (would go more often because of how awful I feel if I knew they wouldn't just send me home.) I've been to my family doctor 3 times who insists Doxycycline will fix everything. I was on 200mg for 10 days and then had to literally convince her to give me more and she only gave me 15 more days worth. I've been referred to a neurologist, cardiologist, infectious disease dr, hematologist and dermatologist. Hematologist said my ferritin is low. I need two iron IV infusions and i also take ferrous sulfate daily now. Family dr said I had leukopenia but hematologist said they don't think so even though they were looking are labs done months prior. Cardiologist said I never had Lyme disease and that my heart sounds fine, but ordered an ultrasound, stress test and 24 hour monitor. I feel so terrible I can't work, can not even stand more than a minute and etc. I should also add that since all of this started I've been diagnosed with hypothyroidism. I honestly feel so bad that I'm afraid I may even die. I know it's rare, but that is just how I feel. I eat very healthy, vegan, mostly gluten free and I avoid sugars. Since I'm unable to work I don't know how to pay to see an LLMD or to try to treat myself. Nobody is taking me seriously and I can't even afford an Igenex test to prove them wrong. What can I do?!?! Any and all suggestions are welcome!!

Post Edited (Laurenelizabeth) : 10/23/2018 2:43:32 AM (GMT-6)

Posted 10/23/2018 1:23 AM (GMT -5)
Also to know more about me I'm only 22. My life has come to me being bed ridden. I've lost friends, family members and even my relationship over this because I can't prove to them I have Lyme disease and they assume I'm lazy, depressed and too anxious. Even an ER doctor suggested i get medicated for anxiety. Which given i had anxiety before this, but it has gotten much much worse.
Posted 10/23/2018 11:55 AM (GMT -5)
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...
Posted 10/23/2018 3:56 PM (GMT -5)
Hi and welcome to our forum,

I am so sorry that you have Lyme.

There are some foundations that help with grants for testing and treatment. I am not sure what it all entails but you could research it as it may be of help to you.

Make sure to check for any deadlines when applying.

https://lymelightfoundation.org/

https://globallymealliance.org/financial-assistance

http://lymediseasechallenge.org/financial-assistance/

Feel free to ask questions and reach out for support here. Our members are knowledgeable and caring.
We do understand what you are going through.

we also encourage you to check out our "New to Lyme" start here thread at the top of the page.

It has good info on Lyme. testing, symptoms and more.

It would be wise to seek out an lyme literate MD as they can clinically diagnose Lyme and co-infections.

you can go to ilads.org to search for one or Lymedisease.org.

Take care and I wish you the best of healing.
Posted 10/23/2018 4:33 PM (GMT -5)
Welcome to our community!

Yes band 23 is specific to lyme.
I would look into the foundations that goshawk posted links to.

Sorry you’re suffering with this and the medical system has failed you.
Posted 10/23/2018 6:07 PM (GMT -5)
Well you can try herbs and see if that helps. The Buhner protocol is what a lot of people try and its fairly cheap. But keep your head up. I know what it's like being 22, hopeless, and suffering with ailments that everyone thought I was making up. I too also lost my long term relationship, job, and money a few years back so I definitely can relate. If you ever need someone to talk to I believe my email is in my profile. Things can get better.
Posted 10/23/2018 10:01 PM (GMT -5)
I used LymeTap.org (Lyme Test Access Program) via Rotary of Eureka. They reimbursed the cost of the test (several hundred, at least 3 hundred or something). If you receive any sort of low income assistance (EBT SNAP food stamp, free county clinic health care) they will help you get an IgEnex test. You just have to send in some paperwork, scan it and email it, requisition, receipts from Igenex then they will cut you a check...yes more paperwork for an already foggy brain I know!
Posted 10/24/2018 5:56 AM (GMT -5)

bluelyme said...
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...

What is bvt? They said since I was negative for IgM antibodies that there's no way I have it anymore which I refuse to believe. Every ER dr, my family dr and specialist I've seen tell me that there's no evidence of Lyme disease.
Posted 10/24/2018 6:02 AM (GMT -5)

JayPoppa said...
Well you can try herbs and see if that helps. The Buhner protocol is what a lot of people try and its fairly cheap. But keep your head up. I know what it's like being 22, hopeless, and suffering with ailments that everyone thought I was making up. I too also lost my long term relationship, job, and money a few years back so I definitely can relate. If you ever need someone to talk to I believe my email is in my profile. Things can get better.

Do you know where would be the best place to buy herbs? I heard of green dragon botanicals, but I was wondering if there was something even better perhaps? Another thing, I hear you must get rid of co infections, mold and metal toxicity and dental health before you can expect to heal from Lyme, does anyone know anything about this and perhaps have suggestions about taking care of mold toxicity illness naturally? I was exposed to very high levels of mold for 6 months and the mold was also airborne. Thank everyone so much for all the replies!! I appreciate it.
Posted 10/24/2018 9:18 AM (GMT -5)
One step at a time. Look into those foundations, you can start on herbals, and you can take activated charcoal at night (2 hours after food, medicines and supplements) to help with the mold. Drink lots of water and you can find other detox methods on the pinned post for new members. (My favorite is epsom salt baths.) As you start to feel better, you can look into the next step. This very scary phase isn't permanent.

You said you can't stand up long -- do you feel like passing out? You can see if your heart rate increases when you stand up. If it increases 30 or more beats per minute, that would indicate that you have POTS. I had that, caused by Lyme, and it improved with Lyme treatment.

It sounds like you're on the right track. Hope you start feeling better soon!

Post Edited (Dahlias) : 10/24/2018 8:22:45 AM (GMT-6)

Posted 10/24/2018 10:27 AM (GMT -5)

Laurenelizabeth said...

bluelyme said...
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...

bee venom therapy. To understand the politics at play please watch under our skin with your loved ones

What is bvt? They said since I was negative for IgM antibodies that there's no way I have it anymore which I refuse to believe. Every ER dr, my family dr and specialist I've seen tell me that there's no evidence of Lyme disease.


Any isda doc linked to insurance will deny its existance ... To understand the politics at play please watch under our skin with your loved ones
.
Posted 10/24/2018 11:15 AM (GMT -5)
The anemia and hypothyroidism alone is enough to cause those symptoms. Did they also test cortisol? It can take a few months for your body to stabilize on the synthetic thyroid hormones. I wouldn't worry too much about the Lyme at the moment if you aren't having neurological symptoms.
Posted 10/24/2018 11:18 AM (GMT -5)

Dahlias said...
One step at a time. Look into those foundations, you can start on herbals, and you can take activated charcoal at night (2 hours after food, medicines and supplements) to help with the mold. Drink lots of water and you can find other detox methods on the pinned post for new members. (My favorite is epsom salt baths.) As you start to feel better, you can look into the next step. This very scary phase isn't permanent.

You said you can't stand up long -- do you feel like passing out? You can see if your heart rate increases when you stand up. If it increases 30 or more beats per minute, that would indicate that you have POTS. I had that, caused by Lyme, and it improved with Lyme treatment.

It sounds like you're on the right track. Hope you start feeling better soon!

I do feel like I'll pass out. I get so light headed, blurred vision and I find it's actually hard to hold my head up. I also walk like an old woman.
Posted 10/24/2018 11:22 AM (GMT -5)

acarined said...
The anemia and hypothyroidism alone is enough to cause those symptoms. Did they also test cortisol? It can take a few months for your body to stabilize on the synthetic thyroid hormones. I wouldn't worry too much about the Lyme at the moment if you aren't having neurological symptoms.

I have been on thyroid medicine for at least 8 months now. I do have neurological symptoms.
Posted 10/24/2018 11:59 AM (GMT -5)

Laurenelizabeth said...

JayPoppa said...
Well you can try herbs and see if that helps. The Buhner protocol is what a lot of people try and its fairly cheap. But keep your head up. I know what it's like being 22, hopeless, and suffering with ailments that everyone thought I was making up. I too also lost my long term relationship, job, and money a few years back so I definitely can relate. If you ever need someone to talk to I believe my email is in my profile. Things can get better.

Do you know where would be the best place to buy herbs? I heard of green dragon botanicals, but I was wondering if there was something even better perhaps? Another thing, I hear you must get rid of co infections, mold and metal toxicity and dental health before you can expect to heal from Lyme, does anyone know anything about this and perhaps have suggestions about taking care of mold toxicity illness naturally? I was exposed to very high levels of mold for 6 months and the mold was also airborne. Thank everyone so much for all the replies!! I appreciate it.

Re: Green Dragon Botanicals: it is a good source - S Buhner says this is one of the sources he recommends.

I’m not experienced/knowledgeable about the mold detox.
I do know that first step is to remove yourself from moldy environment. There are kits you can get to test your home.

There are knowledgeable members here who can help you with the mold issue.
Posted 10/24/2018 3:46 PM (GMT -5)

bluelyme said...

Laurenelizabeth said...

bluelyme said...
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...

bee venom therapy. To understand the politics at play please watch under our skin with your loved ones

What is bvt? They said since I was negative for IgM antibodies that there's no way I have it anymore which I refuse to believe. Every ER dr, my family dr and specialist I've seen tell me that there's no evidence of Lyme disease.


Any isda doc linked to insurance will deny its existance ... To understand the politics at play please watch under our skin with your loved ones
.

Good suggestion.

Too bad it's not on Netflix or Hulu or free stream anywhere I know of. Kind of surprised one of the rich people like Avril or Hadid, and/or ILADS don't pay the price to get them out there for everybody. Wouldn't that be a good thing for everybody? What gives. I still havent seen Under Our Skin 2. I refuse to pay the ridiculous rental fee on the producer's website.
Posted 10/24/2018 3:48 PM (GMT -5)
Do you know the result of your latest thyroid panel? FT3 can be suppressed in chronic illness, endos tend not to correct it unless it is critically low.
Posted 10/25/2018 8:37 AM (GMT -5)

Missouri said...

bluelyme said...

Laurenelizabeth said...

bluelyme said...
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...

bee venom therapy. To understand the politics at play please watch under our skin with your loved ones

What is bvt? They said since I was negative for IgM antibodies that there's no way I have it anymore which I refuse to believe. Every ER dr, my family dr and specialist I've seen tell me that there's no evidence of Lyme disease.


Any isda doc linked to insurance will deny its existance ... To understand the politics at play please watch under our skin with your loved ones
.

Good suggestion.

Too bad it's not on Netflix or Hulu or free stream anywhere I know of. Kind of surprised one of the rich people like Avril or Hadid, and/or ILADS don't pay the price to get them out there for everybody. Wouldn't that be a good thing for everybody? What gives. I still havent seen Under Our Skin 2. I refuse to pay the ridiculous rental fee on the producer's website.

I actually already saw under our skin and shared it with my sister who also has Lyme. I found it here [url]http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8[url]
Posted 10/25/2018 8:47 AM (GMT -5)

acarined said...
Do you know the result of your latest thyroid panel? FT3 can be suppressed in chronic illness, endos tend not to correct it unless it is critically low.

Just looked through mychart and the only thing I could find was FT4 results. Last test was the 15th and it shows 0.83 ng/dL and says the standard is 0.58-1.64 ng/dL. I always ask the doctors about my thyroid, ferritin, white blood cell count and BP and lately they've all assured me it was all ok. I mean minus the ferritin, but I'm working on that by taking ferrous sulfate and getting 2 iron IV infusions next week.
Posted 10/25/2018 9:35 AM (GMT -5)
https://stopthethyroidmadness.com/lab-values/
https://www.restartmed.com/free-t4-normal-range/

Some believe FT4 should be in the upper third of the range, which would make yours low. There are different schools of thought on what is a good value, you need an endo who is willing to adjust the meds until your symptoms are eliminated. Few of them will do this.

Also get tested as early in the morning as possible, I'm camped out at the door when they open.
Posted 10/25/2018 9:57 AM (GMT -5)

acarined said...
https://stopthethyroidmadness.com/lab-values/
https://www.restartmed.com/free-t4-normal-range/

Some believe FT4 should be in the upper third of the range, which would make yours low. There are different schools of thought on what is a good value, you need an endo who is willing to adjust the meds until your symptoms are eliminated. Few of them will do this.

Also get tested as early in the morning as possible, I'm camped out at the door when they open.

Ok now the problem I'm running into, how do I tell my doctor these things? My family doctor thinks Lyme is out of the question and I don't know how to convince them it's not. I actually kind of bluffed when I asked to be on doxycycline longer. I feel a lot better when I have it, although still not well, but I stay out of the ER when I have it. I told her I feel better when I have it and also that it helps my cystic acne(which it hardly does.) I did send her a message and asked if she'd be willing to watch a Lyme disease documentary and Dr Horowitz speech on it. I even asked if she'd sign off on the Lyme-tap application. I'm scared of what she will say to those requests. That being said, how do I ALSO ask to bet referred to an endocrinologist on top of all of that? I actually offended an ER doctor when I told her that the standard ELISA and Western Blot tests aren't accurate. Which in turn made her sassy and she basically said this is all anxiety related and I cried from frustration. I'm trying to avoid being in a position like that again. I'm no good at this.
Posted 10/25/2018 10:21 AM (GMT -5)
Also I feel like maybe trying to explain some of my symptoms may be helpful? Some of the earliest ones I can even recall (brain fog and awful memory) are numbness and sometimes tingling sensations in my lower legs. The ER did an ultrasound and said they were fine. Symptom only subsided once I got doxycycline. I also felt like I wasnt on solid ground even when I was, terrible balance. When I am able to walk I walk holding onto walls and other things. My neck is so stiff and hurts and I even have a hard time holding my head up. It seems as though my head is "wobbly." My muscles are all sore and weak. So weak that I find it extremely difficult to wash my own hair or stand in the shower. When I shower I try to lean onto walls and my legs tremble the whole time. Also showering makes me feel much worse. I actually try to avoid it, but I can obviously only do that so long. I can't lift things I could prior to all of this. I'm extremely fatigued. It takes all my energy just doing very simple things. I have a hard time concentrating and thinking. I get this burning sensation up my spine and into my head. It feels like my brain is on fire. I'm extremely sensitive to heat. If I get hot at all I immediately fill much worse. I get sharp jabbing pain in my back from time to time. Menstrual cramps constantly. Worsened anxiety and depression. My heart feels like it races when I stand or move, even somewhat when I go from lying to sitting. Sometimes my body shakes or I have stabbing sensations. I more times than not have pressure in my head. Cough up phlegm, wheezing, sore throat. Ringing in my ears a lot!! Short of breathe majority of the time. I get night sweats. Heart palpitations/ extra beats sometimes. Headaches that can last a week. Twitching in face. Blurred vision and pain in my eyes. I'm very sensitive to noise and light. I feel faint when I stand and get a sinking into the floor feeling sometimes. Sometimes out of nowhere it becomes difficult to swallow and I'll stop eating a meal in the middle of it and have to get back to it later. I get a cool feeling in my throat and lungs sometimes and a feeling like there's hands around my throat. Pain in my ears sometimes. An overall feeling of extreme weakness and feeling like death. I'm bed ridden and only do things on the few days out of the month that I feel SOMEWHAT ok. My pain is always moving and symptoms always somewhat changing so I never ever know how I'll feel or how long it will last. Yesterday I felt decent and decided to go to the book store to look for Stephen buhners book and others like it. I never made it there before I had to come back. I might have missed some things, but I think I got a lot of them.
Posted 10/25/2018 10:47 AM (GMT -5)

Laurenelizabeth said...

JayPoppa said...
Well you can try herbs and see if that helps. The Buhner protocol is what a lot of people try and its fairly cheap. But keep your head up. I know what it's like being 22, hopeless, and suffering with ailments that everyone thought I was making up. I too also lost my long term relationship, job, and money a few years back so I definitely can relate. If you ever need someone to talk to I believe my email is in my profile. Things can get better.

Do you know where would be the best place to buy herbs? I heard of green dragon botanicals, but I was wondering if there was something even better perhaps? Another thing, I hear you must get rid of co infections, mold and metal toxicity and dental health before you can expect to heal from Lyme, does anyone know anything about this and perhaps have suggestions about taking care of mold toxicity illness naturally? I was exposed to very high levels of mold for 6 months and the mold was also airborne. Thank everyone so much for all the replies!! I appreciate it.

I think pursuing the Buhner protocol is a good avenue. It's one of the more affordable options (relatively speaking). If you can I'd check out Buhner's books. They have a lot of good info, but in the meanwhile can always visit his website and look into starting some of the basic protocols. I'd start the protocols very slowly to hedge against herxing too strongly.

Given your symptoms it sounds like you have babesia, and probably multiple tick borne infections. I had many similar symptoms (brain on fire is the worst symptom!!!), extremely sick and bedridden. I had all 3 infections (lyme, bart, babesia, with babesia being the dominant infection).

Personally I liked Green Dragon Botanicals for the basic lyme protocol. For the babesia herbs that Buhner recommends Woodlands Essence is very good. This is where you can get CSA which is one of his main recommendations for babesia.

When it comes to metals and mold... yes those can be very important issues. I'd take one thing at a time, keep researching but just remember it is a marathon and takes some trial and error. But one thing that can help you tackle multiple things is incorporating multiple detox methods. Activated charcoal is supposed to help with detox from mold and the infections. Infrared sauna is also very helpful. As icky as it is I have heard coffee enemas are helpful for both lyme and mold patients.
Posted 10/25/2018 11:49 AM (GMT -5)

Laurenelizabeth said...

Missouri said...

bluelyme said...

Laurenelizabeth said...

bluelyme said...
Welcome to the nightmare ...i saw 33 docsbefore finally taking my life into my own hands with bvt ...its pretty cheap....welcome ...sorry but if you tested positive ,its like a pregnancy test there is no partial positive . If that doc agreed with test ,by law he would be required to treat u for only 30 days. ...you may need months ...

bee venom therapy. To understand the politics at play please watch under our skin with your loved ones

What is bvt? They said since I was negative for IgM antibodies that there's no way I have it anymore which I refuse to believe. Every ER dr, my family dr and specialist I've seen tell me that there's no evidence of Lyme disease.


Any isda doc linked to insurance will deny its existance ... To understand the politics at play please watch under our skin with your loved ones
.

Good suggestion.

Too bad it's not on Netflix or Hulu or free stream anywhere I know of. Kind of surprised one of the rich people like Avril or Hadid, and/or ILADS don't pay the price to get them out there for everybody. Wouldn't that be a good thing for everybody? What gives. I still havent seen Under Our Skin 2. I refuse to pay the ridiculous rental fee on the producer's website.

I actually already saw under our skin and shared it with my sister who also has Lyme. I found it here [url]http://www.veoh.com/m/watch.php?v=v21055812yWtmpgB8[url]

You can rent both for $9.99 (and just one for $5.99)
I don't think that's a ridiculous fee.
Posted 10/25/2018 2:50 PM (GMT -5)
You might have POTS if your heart rate rises when standing, then stays high. As for working with conventional doctors, most won't deviate from their treatment standards, and some could be disciplined if they do. Some of them have an ego problem and will be offended if you question their methods. I saw an endo who wouldn't treat me even though my testosterone level was clearly unhealthy for my age.

The medical system is no friend to the chronically ill, it's not designed to cater to individual needs. Much of this is due to how insurance billing works, your condition and its treatment has to follow a strict framework in order for them to be compensated.
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