posted
My best friend told me he thought I had Lyme disease for the last 2 1/2 years. I rejected everything he said because I had lost my husband right around the time that all of my symptoms started, so I thought I was just depressed.
So, my friend who does have Lyme had me promise to at least be tested by his Lyme doctor, so I agreed. I was tested through Labcorp and I had 5 positive bands showing active infection for Lyme disease. I couldn't believe it because I never remember being bitten. I live off of death benefits and could not afford to continue to see this Dr. He gave me Doxycycline, but I didn't take it because the rest of my family was saying I was just depressed. I couldn't believe my symptoms could come from a tick bite.
So, not only have I not taken the antibiotics, but my friend tells me that 30 days of antibiotics won't get me well anyhow. He says I will need 6 months or more probably based off what he has seen and his own experience.
5 months have passed and I don't know what is going on with me. I lost my mother kind of unexpectedly 3 months ago and many of the symptoms I had are all getting worse. I have dropped about 40 pounds and my appetite is zero.
I am feeling Psychotic in certain ways. I'm confused and feel like I'm outside of myself. I can't think straight alot of the time. I'm walking around my house and I feel like I'm having a heart attack 24 hours a day literally. My friend says it's intense anxiety and perhaps it is, I can't tell the difference. I don't know what I feel anymore. I can't even put adjectives to these sensations. My Dr. gave me Xanax, but it only makes me yawn and does nothing for this chest pain or anxiety, or whatever it is. I've been checked out in the ER and my heart is fine.
I feel a sense of being sick 24/7. I get confused and feel weird sensations in my head. My head doesn't feel right. It's like a whooshy feeling. People talk to me and I can't process what they are saying. I feel like I'm dying and I'm driving everyone crazy. I pace all over my house and I tell everyone I'm dying and to help me. I'm scared to be left alone. I'm scared to drive. When I do drive, I feel lost in my own neighborhood.
I have been isolating myself because of this and the few friends that do come by all say that I sound and act like I am drunk. I don't drink and I'm not sure what they are talking about, but I don't feel drunk, but just out of it. My memory is terrible too. I'm having trouble putting my thoughts together as well.
The worst part is that I have 3 kids, they are twins 15 and an 18 year old, all boys. They see me so sick and I'm saying stupid stuff like I wish I were dead, I can't live this way, I don't want to live. I tell them they don't love me and don't care about me. I don't know what or why I'm saying these things, I just feel so awful. This is not me and I'm starting to feel like I have brain damage or something. Perhaps this is the Lyme and my best friend has been right. He says the Labs are proof positive.
My family is telling me to get Psychiatric help except for my friend who is telling me I need to treat the Lyme and the Psychiatric symptoms will clear up. He treats with alternative medicine and has brought me over some extra bottles of his herbs, but for some reason, I can't get myself to take them. He is getting mad at me telling me that all I have to do is put it in my mouth and swallow some water. My friend does say that perhaps I may benefit from some psychiatric medicine. He says I will never get well until I get rid of the Lyme. So, it does appear that I do have it, but I'm so far gone now that I see ever getting well.
He is sitting over top of me right now making me type this and ask for your advice as I didn't believe Lyme disease could cause any of this. He says I don't make sense even as sick as I feel. He says I need to wake up and realize that this is Lyme and has nothing to do with my mother passing away anymore or at least not so much to be causing all of this. I miss my mother dearly, but I don't see how losing her could cause all of these crazy symptoms either. So, my friend says my immune system is not working right and I will get worse if I don't treat. He tells me I will wind up in a Psych ward if I don't take action soon.
I feel so lost and alone and I honestly don't know what to do. I could never type this post if he didn't stand over me and make me and help me with my grammar and spelling. It has taken me almost an hour to just type this. He gave me a DVD of a movie called under our skin. It sits right on my office desk. I only need to put it in the DVD player of my computer and watch it, but I don't and won't and I don't understand why.
So, I do know I am getting worse each and every day now. I don't know what to do. I owe the Lyme Dr. money and he told me he can help me, but I don't make the appointment to see him and again, I don't know why.
Please give me any and all advice. Do I listen to him or my family ? He is a medical person and one of the smartest people I know. I just feel torn because of what my family is telling me. My father is not a medical person and doesn't believe that I have Lyme disease or that Lyme could cause any of this. My friend has shown me articles from Psychiatrists that do show that Lyme can cause all of this. I am as lost as one can be with all of this.
posted
Dear Sherry: God Bless you for one. I am so sorry for all that you have been through of late... I think you are very blessed to have a friend that is keeping behind and beside you to get further treatment. Reading your post is rather eerie because even on treatment, there are times I feel like this... just plane out of it and my memory is horrible.
The good news is Sherry, you do not have to live like this permanently. You do need to see and I recommend as soon as possible a good LLMD. I feel very sorry that the psychiatric piece is so hard for you with the awful anxiety, isolation etc. All notorious for this crazy disease and its coinfections. I don't know if anyone told you about those, but it is likely that if you hav Lyme, you also have coinfections and you need to be properly treated by a LLMD as soon as possible. The sooner you start treatment, the better. I really identified with you as it was my friend after eating dinner with her very soon in to my being bitten that called me afterwards and said, something is very wrong. Do you think I realized it... I just thought I was super busy and overburdened but then came all of the other symptoms- wrong words, bad memory, night sweats, sweats during the day and terrible headaches.
You have TERRIFIC LLMD's in Maryland and the Seeking A Doctor Thread would be a great place to ask for a list of LLMD's in your area.
You may well find one that can take your insurance. I would certainly try. I will say a prayer for you and hope that your friend will assist you in getting to a good LLMD as you can beat this. There are many on this board and many more that have since gone that have done just that.
Please let me know if I can help in any way. Blessings -
Posts: 859 | From Southeast | Registered: Mar 2011
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Welcome to the forum, you have come to the right place. You are very lucky to have such a good friend. You should trust his advice, he sounds like he knows what he is talking about. 30 days of Doxy will not cure you, but there is hope and your story is all too familiar.
There is another member here whose story sounds very much like yours. You should post in "Seeking a Doctor" and find a good LLMD right away.
Trust me it does get better. The neuro symptoms can be very hard but if you understand what is causing them, it helps to know that they are treatable.
I am using herbs too, they are amazing for treating this illness. Also, rememeber that Lyme is a clinical diagnosis and a negative test means nothing. You did have a very strong positive and all your symptoms point to lyme.
Feel free to ask anything you like here. It is a safe environment to express your thoughts and concerns.
posted
Ok, I will be the third one here suggesting that you post in the Seeking a Doctor section for Lyme-literate doctor referrals!
It's the illness, not you. The bacteria goes into the brain within 12 hours of exposure and starts to inflame our brains. It's best if you start to learn how the bacteria operates in us and then you will understand the symptoms.
Since it affects the brain, it's hard to think. It affects our emotions. It affects practically everything. That's why getting treatment is so important.
Yes, we do come with stress, and stress can make the symptoms worse, if it lowers the immune system. However, you would have this illness even if you didn't have the stress you have, so it needs to be treated.
Try to separate yourself from the illness. You can still love your kids and your kids can still love you. It's just an illness you're dealing with. Maybe start to think of it like that - that everyone does care about each other, but it's the illness that needs attention right now.
And yes, if you had 5 positive bands the first time you tested, that's enough testing. Other tests can be weaker ones. You can't treat in a month's time. Those doctors are not Lyme-literate - you need to see a real Lyme-treating doctor.
You have a great friend there - sounds like he can help you take the steps you need to take.
Here's an idea, but only if it works for you all. If it's too difficult for you to watch the DVD of under Our Skin, would your kids be interested in watching it if you told them it's what you're dealing with and will help them to understand?
There's even a part for a kid, that's cartooned, as he explains what the tick does and how the bacteria enters the bloodstream and where it goes.
Posts: 13116 | From San Francisco | Registered: May 2006
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jackie51
Frequent Contributor (1K+ posts)
Member # 14233
posted
Sorry you are having to deal with this. This sounds like your lyme & co-infections were brought on by the stress in your life. Lyme can remain dormant and then come out when your immune system is suffering. This all happens when there is major stress. Happens to kids going off to college, folks getting married, having a baby. Really, anything that is stressful.
I will PM you a doctor who takes insurance. He's reasonable although I don't appreciate some of his staff.
The feeling that you don't care is all part of this. You will get better. Stick with this friend. Good luck.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am happy your friend was caring enough to stand over your shoulder and force you to post the message that will probably save your life. No question lyme and the co-infections are causing your symptoms.
Your children will be relieved to know their Mom is not falling apart but rather infected with a serious pathogen that she has chosen to recognize and fight.
It seriously affects your brain causing mental confusion, memory loss, depression, anger and a feeling of just not caring. Don't let it succeed at destroying you. Get help.
Almost everyone has co-infections, several of which doxycycline does not affect. So even if the doxy "cured" the lyme in four weeks, which is unlikely, other infections such as babesia were never addressed. Babesia can cause weight loss, depression and anxiety. Consulting with a competent LLMD (which stands for Lyme Literate Medical doctor) is really important to get you on the path to recovery.
You and your family have been through so much. I really feel for you. It seems totally unfair that you also have to deal with such a wicked disease after everything else you have suffered. But there are a lot of people (your friend first and foremost) that reach out to help and offer support. It gets better.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Your friend saved your life.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
When I could no longer afford to see an LLMD, I started antiparasitic herbs and the salt/c protocol which saved my Life.
Parasites/worms play a MAJOR part in Lyme disease. Do a search on here by typing parasites and salt/c into search bar at the top.
The herbs are also antifungal and antibacterial. These are VERY inexpensive protocols and work well.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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posted
I have recently been to a specialist in NY state who says I definitely have the symptoms of Lyme. He started me on 2 months of oral antibiotics for starters. I am from Southwestern Ontario. I am suffering from major neurological symptoms for years, am pretty much debilitated and am determined to get better. Any ideas how I can make sure I get proper help here in Ontario? I am under no illusions. The more I read the more I see how tough things are...to get help. Is there any chance of having a local MD continue help under the direction of the Lyme Specialist? He is top notch. Any other ideas? Also, how helpful are herbal products in conjunction with meds? Thx folks...
Posts: 43 | From Ontario | Registered: Apr 2011
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Rhody, hello. Read your post and suggest you post a new topic by going to the bottom of the page and on the left click on post new topic and ask your questions that way. You will probably get more responses.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Please know everyone on this forum is going through the same thing, all in different ways. I have a 16 year old that doesn't know who he's coming home to everyday. He understands after seeing me so long that its not me, its the disease. Explain to your kids and I know it hurts you, but it'll make them see whats going on. Thank God you have your friend that can direct you in the right way. Stress and lyme go hand in hand. Read every post, everyone has a different way of getting this under control and is trying to get their life back. Read success stories. People were in the same condition and have gotten better. Its hard cause theres different forms of treatment. Everyone is treating differently too, so take everything in. Its so hard when things are so bad. If a xanax can help you get through the day for now, take it. Antidepressants, whatever. Its hurtful to miss life. Its a shame almost disgrace that everybody has to endure the pain this stuff does. I'll think one day clear again and see the day as I once used to, but its not now. Others are here to help. Day at a time, sometimes minute at a time. I'm sorry, but hormones play an big role in this. Alot of complex things going on. God bless and PM if you want to.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
You must live through this one day at a time.
Welcome to lymenet, for you have taken a step in the process. I really struggle watching others just starting this journey.
I will not lie to you...it is not an easy journey. It could get worse before it gets better.
Treatment with abx and finding the treatment that is beneficial for you is a long process in itself.
Sometimes you feel one step forward, two steps back. You could be one of many luckier folks that just taking abx for a year and it puts a stop to the nightmare.
Take care of you, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Also: psychiatric care AND treatment for your Lyme are not mutually exclusive. You have lots of grief work to do. While you are dealing with the underlying infection(s), you can see a counselor, see a LLMD-psychiatrist, and get some help managing your symptoms.
Susie
Posts: 234 | From albany, ny | Registered: Mar 2011
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Dear SherryBerry,
So sorry you are in a bad place right now. You did not find Lymenet by accident. At Lymenet you'll get support and feedback to help you on your healing journey.
Many of us know what you are going through.
I'll spare you my details and just say, this is my third or fourth relapse (depending on�if the first time I was treated with abx really counts)...
I opted out of abx this fourth time and am following Dr. J's (KS) protocol for close to a year. I am doing quite well.
The neurological symptoms and being VERY exhausted were the worst part for me (I have a high threshold for pain).
Using this product has eliminated the neuro symptoms.
Neuro-Antitox II CNS/PNS. It is one of the things that has given me my life back...and especially my mind�I like having my right mind!
It is the third item listed. You can check it out at
You'll notice this formula also comes in "basic", "cardio" and "skeletal".
Also you'll notice on the site is links to the ingredients in the formula along with an explanation of what they do.
FYI: I do not sale this or any product. I get no compensation of any kind. And BTW I am not a doctor.
Posts: 2188 | From Oklahoma | Registered: May 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Sorry to hear about your situation. I have a lot of psych issues combined with lyme. They make each other worse. You probablly need to treat both at the same time. Abilify was a life saver for me. Hopefully your psych stuff will get better with treatment. For me they got worse when i started treatment, probablly from die off.
I also found a psychologist who helps me cope with chronic pain and chronic illness. I never thought just talking could help so much. You have to find the right person but sometimes he helps me more than my meds!
I think if herbs is all you have then start there but you really need antibiotics.
Many thanks to your friend for helping you. The person is a true friend!
Posts: 3905 | From USA | Registered: May 2007
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posted
Everything you described is like hearing about myself. I was totally disconnected to everyone around me for a long while and just thought it was stress. My family told me how my I "changed" and I didnt see it.
Stressful job, death in family, son diagnosed wtih acute leukemia suddenly and hospitalized in isolation for 3 months all while I was getting my master degree!! What else could you think of but stress..
When all was settled down I was worse than ever, severe vertigo, anxiety through the roof and feeling like I wish I would just die. My kids keep telling me i am so morbid!! I wsa clinically diagnosed with chronic neuro lyme. I did have two known tick bites that my GP ignored and never treated with doxy at the time.
If you took doxy and felt worse than you for sure have lyme and need treatment. If your symptoms came back with a vengeance after a stressful event then you surely have lyme and probably co infections, even if you cannot remember being bitten by a tick.
If you cannot afford an LLMD right away, just call IGENEX in california and have them send you a blood kit for lyme. You will need to pay for the bloodwork but they send you the bill to send to insurance for reimbursement. Your regular doc can draw the blood for you (as mine does) and send the kit out to igenex. I went first just for the IGG and IGM western blot for 200 dollars. THe test for co infections are only 38 dollars each if you can afford it.
After he gets the results (2 or more weeks) you can see if you need if you have any positive bands that are active again. I am not sure what test he ran the second time on you but if you have had lyme and even after it is cured, you wil always test positive on the past bands of the western blot? Doesnt make sense that it showed lyme once and not the second time unless he used the Eliza test?
Thank God for you friend, they are rare and few. Stick by him and let him guide you. You can find LLMD's who take insurance if you cannot afford to lay out the money. You do get money back from your insurance when you turn in their bills. I have been getting 80% back so far on everything..
Get healthy and I am sure you will!!! Ann
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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The coinfections invaded my brain and the effects made me want to die during a period of time.
I hid out as best I could so people would not experience it.
all the advice to get lyme literate care is dead on. You must!
The worst thing about all this mind emotion junk and feeling psychotic is that you are wandering in a desperate wilderness wondering what is happening... It is the illness affecting the brain. Not you!
good for you that you spent the hour under your friend's care.
I have felt just like that and wanted to die. Awful I know. But while I get some anxiety around the edges...it is not even close to how it was... as the infections are being treated.
I did not get really worse before I got better. Well I did but not with a lyme literate doc.
some folks just follow an irregular upward path during treatment...so feeling worse is not inevitable...
but at least you will be on the path of getting better. hope is key... and a lyme literate doc helps spur our hope. so does learning and information and being in forums like this.
Invaluable. absolutely invaluable.
i pray your turnaround is soon and definite.
-------------------- Not everything in life that can be counted counts and not every thing that counts can be counted...Albert Einstein Posts: 208 | From Northeast | Registered: Aug 2010
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MichaelTampa
Frequent Contributor (1K+ posts)
Member # 24868
posted
The all-to-familiar story is ... people have lyme but living with small symptoms and don't realize it, it's just not that bad ... then some event happens that really weakens them (car accident, family member dies, broken leg, ...) and the lyme really takes over ... the neurological symptoms are thought to be psychological in nature, and so the lyme goes untreated, and now all the problems they have in the future will be looked as the person has not dealt well with that one incident in the past.
Yes, there are grief issues and psychiatric care might help you out with that.
But there is much more going on, it all sounds very clearly like lyme. As others have said, you need to find some way to get adequate lyme treatment.
Good luck!
Posts: 1927 | From se usa | Registered: Mar 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
Your friend is right. Please, please get a proper Lyme assessment and appropriate treatment.
Brain infections and inflammation affect our ability to think rationally and choose a path that's in our best interest. The overwhelming fatigue doesn't help, either!
Even though you are unsure, please follow your freind's advice, and let him help you.
The depression and confusion are from the illness! It's not you!
All these terrible symptoms get better with adequate treatment.
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