HealingWell
Search Close Search
☰

Contracted Lyme Summer 2014. Now two years later still have symptoms but PCP says No Lyme?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 5/29/2016 9:49 PM (GMT 0)
Hi everyone,

I contracted Lyme summer of 2014 and was given Doxy 100mg 2x per day for 60 days. I never felt ok after the 60 days. My PCP gave me Elisa test using CDC guidelines and it was negative (2 months after initially contracting Lyme) It's been two years and my symptoms have gotten worse and worse and my PCP tells me I do not have Lyme or Co-infections and to see a psychiatrist of physical therapist. I have terrible memory problems and cognition issues. I have constant electric shock pains in my legs, have trouble walking, and it feels like I've been stabbed with a knife in the large nerve running down back of right hamstring. Depressed all the time, wake 5-7 time a night- had bad night sweats a month ago that subsided after I took Sida Acuta and Cryptolepis (Buhner protocol for bABS) At my insistence she gave me a western blot and lyme panel via Imugen labs which both came back negative. I am seeing a Naturopath for Igenex western blot in a few weeks. I know I still have Lyme- and am not crazy like my Almighty PCP thinks she is. Feeling very depressed. Single dad since 1994 and raised my daughter alone (had custody of her since age 3 for 4-5 days every week) She is now 26 and ,moved out of my home last Summer to live with BF. I need her and she is gone now. I miss her. She stops by several times per week- but does not believe my symptoms and just tells me I am seeking attention. confused

I can upload the western blot test results but do not see a way to do that
Posted 5/29/2016 10:03 PM (GMT 0)
So very glad you came back to us.

It sounds like you have lyme and I would not be surprised at all if it was spurred on by the stress of your daughter "leaving" you.

Daddy, she has not left. She is only a phone call away. I was a single mother for 16 years and when my daughter moved out, I went to the grocery store, grabbed a cart and then started crying. I had no idea what I liked to eat. I had been catering to my daughter's dietary wishes for so long I lost myself.

You are reacting normal. It is not easy for our babies to move out.

Now about your lyme disease. It was never gone. It has been there waiting for you to get a little weaken in your immune system so it could rear its ugly head.

Loss is a great stress factor and it will definitely lower your immune system.

But, you can get back in treatment and move on to better health.

First, get a lyme literate medical doctor. Second, start detoxing. Third, explain to your daughter that you have relapsed and that you are going to do whatever it takes to get lyme is remission so you can have her and her boyfriend over for dinner.

You can do this!!!
Posted 5/29/2016 10:22 PM (GMT 0)
So sorry that you weren't treated long enough the first time around.

You said you never felt ok after the 60 days of treatment. Unfortunately you were inadequately treated.
Treatment should continue until your symptom free...and then several weeks longer.

I saw posts of your's from 2014 - and you were taking herbals...did you continue with that?

If you can't upload your results..maybe you could type them in a post?

I understand how you feel about your daughter leaving. My son moved out with his girlfriend soon after my symptoms hit me...he is an only child..so it really hit me hard...I was feeling weak, vulnerable and emotional from the disease...and felt devastated when he left. It does get better, though. I still miss my son greatly...but I am dealing with it a lot better.
Give yourself time.

I agree with PeteZa - find a LLMD and get back into treatment, and of course detox like a madman.
Posted 5/29/2016 10:28 PM (GMT 0)
Thank you. Ever since my daughter moved out I have not been the same. She was ready- but I was not. I miss her sleeping in her bed at night, and watching movies with me. We went on amazing vacations every summer since her mother left me when my daughter was 3. She still spent time at her mom's- I just had custody 4-5 days per week because I wanted her in my life more. She went to Israel two weeks ago and I barely slept until I picked her up at JFK airport last Friday morning. Lyme really makes me feel so shattered. My daughter yells at me because I forget things she just told me minutes earlier. I hate that. She gets mad when she sees I do not feel well and tells me I am looking for attention. I told her recently that if for 5 minutes she could feel what I do= she would have her world forever changed. Her BF has no interest in being friends with me- even though I have extended my hand in friendship many times. When my daughter went to Israel- I IM'd him on FB and asked him to get together for a meal or just chat and he never replied back except to ask things about my daughter in Israel and occasionally a half hearted "How are you?" I did my best- if he wants no part of me I have no control over that. My daughter said he was never close to his own so maybe that is what the issue is....

I cannot afford an LLMD- but am seeing Julia Greenspan in 2 weeks and she is a Lyme Literate ND. She will do igenex too and the visits are covered by my insurance- except for igenex. I have gone into crushing debt buying all sorts of herbs, tinctures and remedies over the past 2 years. I did the entire Buhner protocol for a year and it helped but never cured me. I take D3 with K2 5000 IU per day.
I eat vegan 99% of the time and the other 1% vegetarian. Sadly I have no friends. Not one except my daughter. My co-workers do not want anything to do with me. I have no control over that. I'm just a very sensitive and caring person- if that's too much for them so be it.
Posted 5/29/2016 10:43 PM (GMT 0)
Jody - will your ND be using an herbal approach ...or is she licensed to prescribe antibiotics?

When you did Buhner for a year - did you include the protocols for Bartonella and Babesia...or did you just focus on lyme?


Just keep extending your hand in friendship....and one day...he may come around. That's all you can do.
I'm sure your daughter will realize one day that you were there for her...she's still young.

I hope you stick around here...and post when you need support...help...or just to vent.
That's what we're here for.
Posted 5/29/2016 10:45 PM (GMT 0)
I will enter the Imugen Wester Blot results. My PCP proudly said "See I told you there is no Lyme in your or co-infections- so see a physical therapist and a psychiatrist asap."

Imugen:

Specimen: Whole Blood

Babesia PCR : Negative Status F

A PHAGOCYTOPHILUM PCR Negative Status F

Lyme Interpretation

Comment: No igM, IgG or IGA antibody to B Burgdorferi

No serologic evidence of early infection with Bb

IGM capture: <1.0 Antibody level F reference range <1.0

IgG capture <1 < 1.0 Antibody level F reference range <1

IgA capture: <1 < 1.0 antibody Level F

IgG Blot G39/40 Value 1 Reference range <5 Units: Reactive Ag's Unit: Reactive Antigens

IgG Blot 49736 Value 0 Reference range <5 Reactive Ag's F
Unit: Reactive antigens

Performed by IMUGEN LABS NORWOOD MA
Posted 5/29/2016 10:53 PM (GMT 0)
I wish I could upload the picture as it's hard to write all the results down! Julia is a naturopath and can prescribe antibiotics yes. I asked that question before I agreed to see her. I do not want antibiotics- but if she feels it's necessary I will. The Buhner protocol I started in 2014 was for Lyme only. I took the "LB Core Protocol" from green dragon botanicals. They were very good- and I should have stayed on them for at least 2 years but stopped after 1 year. I did not take anything at that time for Babesia or Bart.
I also took high doses of D3/K2, probiotics, turmeric, krill oil, glutathione, syntol (to kill possible candida)
took a supplement for cognition but forget what it was....took Chaga tincture, Eleuthero, and also took a great tincture from Crescent Moon Herbals for parasites- it had black walnut, sarsaparilla, wormwood and a bunch of other herbs. I could not afford all that stuff and am now in lots of credit card debt- not sure it was worth it because I am still sick. Thank you so much Girlie and Peteza.
Posted 5/29/2016 10:57 PM (GMT 0)
Kids don't know about mortality until they are way into their 20's and they can be pretty self-centered until then. That is just the nature of kids.

Hang in there Dad and she will come around.

You need to find something you are interested in. You sound like me, I was lost not having a daughter around. I had no idea what to do. No playgames, no taxi to events, no huge amount of girlfriend parties and no reprimanding for cleaning up her messes. But most of all no one to care about me too. There was no one that knew where I was or when I would return. I was so very lonely.

I got new friends and got hobbies. I found myself and re-discovered what I was like and what I liked to do.

I found you cannot pin your happiness on someone else. You have to get that happiness all yourself.

It is a hard transition being alone if you are a single parent. Very hard, but it also is a time for re-birth and finding your self as you and not a parent. What kind of a person are you? I had been MOM for so long that was my identity. It was fun discovering me. And I did not like sugar frosted flakes!!! lol
Posted 5/29/2016 11:02 PM (GMT 0)
The GreenDragon LB Core I took for a year has:

Japanese Knotweed root - 500 mg.
(Polygonum cuspidatum) - wildharvested - NE United States

Cat's Claw vine bark - 500 mg.
(Uncaria tomentosa) - wildharvested - Peru

Eleuthero root - 430 mg.
(Eleutherococcus senticosus) - organic - China

Sarsaparilla root - 110 mg.
(Smilax spp.) - wildharvested - Jamaica/ Mexico

Dandelion herb - 110 mg.
(Taraxacum officinale) - organic - NE United States

I also took the LB Tincture a few times: Japanese Knotweed root (WLD), Cat's Claw vine bark (WLD), Andrographis herb (ORG), Sarsaparilla root (WLD), Dandelion herb (ORG), Raw Honey

Crescent Moon Co-infection tincture: Ingredients: Cat's Claw Bark,
Japanese Knotweed, Red Root,
Sarsaparilla Root, Stephania
Root, Sweet Annie.

Crescent Moon advanced formula:

Ingredients: Astragalus, Cats
Claw Bark, Cinnamon,
Japanese Knotweed, Nettle
Leaf, Oat Straw, Pau D’Arco,
Red Root, St. John s Wort,
Sweet Annie, White Willow
Bark.

Post Edited (jnoller56) : 5/29/2016 5:06:18 PM (GMT-6)

Posted 5/29/2016 11:05 PM (GMT 0)
jnoller56--

GREAT posts already.

I just wanted to urge you to see your daughter's graduation toward the next awesome stage in her life--not as a loss to you (although it's natural to feel some sadness) but as a confirmation that you raised a wonderful person and she was ready to step forward in her life because of the foundation you gave her. Please feel proud that she gained confidence to be independent and that she found someone wonderful who also thinks she's wonderful. You did the hardest job an adult has--to raise another human being and you also instilled in her tools to be a good parent at some point in the future.

You're now embarking on another challenge in your life--healing from lyme & co. As others stated you can do this but as you know, it's a journey. Your daughter and the BF are not going to "get it"... not until they educate themselves about lyme & co, which might not happen. And not until they see you going through treatment and coming out the other side of it--healed. That is the cold, hard truth.

She will always love you but she is likely overwhelmed by being your only support system (and frankly, she shouldn't be your only support system--this often creates an additional strain where one surely exists watching someone you love suffer so much). And she is likely to be challenged to support you until some big change occurs. I would encourage you to invite her to come here (anonymously, if she likes) and ask questions about lyme & co and let us help enlighten her. There are also many other resources available to help loved ones cope (see the "New to lyme?" thread at the top of the page).

I won't bother providing the number of people who are now in my life due to this illness but I can count on one hand. It's devastating and most everyone here understands exactly what you are going through. Since we can't control how these people interact with us-we must move forward with what we CAN control.

You have a couple more good things going for you--you have a job! Be thankful that you are working--it could be worse! Although working can also add to the fatigue and stress so you need to allow yourself to rest as much as possible. Stress (whether from work or daughter) will ONLY exacerbate your illness. And you are wise and coherent and proactive enough to know that HW.com's lyme forum is a valuable resource and you had the strength to reach out... some people don't even have that. So, you have a journey in front of you but you also have a good start.

Regardless of test results, you will still likely need an LLMD or a lyme specialist to help you develop a treatment protocol (a regular MD will still not know what to do with positive IGeneX tests--if they are even able to determine that they are positive).

There are several trouble-shooting suggestions we talk about here for people who are not making progress with treatment. There is a LOT more to treatment and healing than taking antibacterial pharmaceuticals or herbals. Unfortunately, even some lyme specialists miss this very important part of our reality.

A few questions to ponder:

Do you also have other infections/or other loads creating additional burden on your immune system that is keeping it from functioning well?

- coinfections? You don't necessarily need to test for these - see: www.healingwell.com/community/default.aspx?f=30&m=3033860

- high viral load(s)? Google viral symptoms and also see: www.healingwell.com/community/default.aspx?f=30&m=3618192

- yeast/fungal overgrowth? See: www.healingwell.com/community/default.aspx?f=30&m=3287783&p=2%5B/url%5D

- gut dysbiosis that might also be affecting digestion and food/supplement absorption? See:
.................Bowel Disorders, Part I: about Gut Disease
perfecthealthdiet.com/2010/07/ulcerative-colitis-a-devastating-gut-disease/
.................Bowel Disorders, Part II: Healing the Gut By Eliminating Food Toxins
perfecthealthdiet.com/2010/07/bowel-disease-part-ii-healing-the-gut-by-eliminating-food-toxins/
.................Bowel Disorders, Part III: Healing Through Nutrition
perfecthealthdiet.com/2010/07/bowel-disease-part-iii-healing-through-nutrition/
.................Bowel Disorders, Part IV: Restoring Healthful Gut Flora
perfecthealthdiet.com/2010/07/bowel-disease-part-iv-restoring-healthful-gut-flora/

- other gut bacterial load that sometimes occur from taking antibiotics or having a weak immune system?

Are you detoxing appropriately with effective and consistent protocols?

Do you have functional problems detoxing due to DNA mutations or other health issues?

Won't overload you with too much more info - please give this some thought and let us know what you think. And ask any other questions you might have.

-p

Post Edited (Pirouette) : 5/29/2016 5:11:11 PM (GMT-6)

Posted 5/29/2016 11:13 PM (GMT 0)
Since Lyme rarely travels alone...I'm thinking that might be why you didn't get well on the Buhner's herbs for lyme.
You most likely need to treat Bartonella and/or Babesia.

Electric shock pain in legs, nerve pain - hamstring - could be bart (or lyme).
The sweating could be babesia (especially since you got relief when taking the Babesia herbs).

Also need to mention detoxing - here's a great thread with many detoxing ideas:

www.tiredoflyme.com/detox-methods.html

Take a look - there are some inexpensive ones.
Posted 5/29/2016 11:15 PM (GMT 0)
Great post, Pirouette! thank you for that!
Posted 5/29/2016 11:17 PM (GMT 0)
Thank you everyone who replied. I'm very tired right now and am taking my dog Rocky for a walk. It's a warm night here in Northeast CT. I need to feel more healed before I can join any groups and meet others. I did take Kundalini and Hatha yoga last Fall- but had to stop because I was in too much pain. I now have some weird pain in my left shoulder that goes down to my left arm and causes numbness in my fingers. Have had it now for about 5 weeks. it could be Lyme or a co-infection. I saw a physical therapist for one session and realized I could not afford it= 3x per week at $35 a pop is beyond my limited budget. I'm still stressed about my daughter too. She could really not afford to move out of my home- but did anyways. Since last August her and the BF can barely afford rent, internet, heat and food. He has no health insurance at his full time job (Pizza maker) and that really bugs me. I told my daughter (She wants to marry him sometime in the next 2 yrs) that he needs health insurance! If they ever married and he went down seriously ill- that could spell doom for both of them. She knew I was right and said he needs to secure a job w/benefits. My daughter calls me when I am going food shopping and I spend half my food money on her because she does not have the money to buy all the food she needs. So I end up eating beans, rice, tofu, salad, and a few frozen dinners per week and not much more. I love my daughter with all my heart and she knows I am always here for her. She is in college still (Got a BS in communications and Spanish) but never found a full time job. So even tho she moved out- I still buy her food, at times clothes, and give her $$ that I cannot afford to but feel so bad for her too. I can't say "no" to someone I love so much. I don't mind eating very little. A month ago her car brake system failed and I had to use all my paycheck that week $800 so she could get to college and work. I'm behind on many bills now. I even offered for her and BF to move in with me- just pay the electric bill and their food and live her and save oodles of cash for the next year or two and they said no...

Question for all- Does anyone worry that Lyme is an STD? I have not dated in gulp....22 years...decided to dedicate myself to raising my child...but I worry about that because at 58- I do want to meet someone and not live alone forever!!

Post Edited (jnoller56) : 5/29/2016 5:25:42 PM (GMT-6)

Posted 5/29/2016 11:26 PM (GMT 0)
Hi again Jody--

Do me a favor... have a great walk w/ your pup and enjoy the fresh air...

Then come back inside and re-read the suggestions the members here posted for you. This is really good information and sometimes, we just need to let things marinate. It's OK to put yourself first. If you don't heal from lyme & co, then who will be there for your daughter? And how can things improve with her? You come first and no one can prioritize you but YOU. ;)

-p
Posted 5/29/2016 11:32 PM (GMT 0)
I think - since she moved out - you need to let her buy her own food and pay her own bills...you need to take care of yourself.
It's time to think about yourself now...

I know it sounds harsh...and I struggle with the same thing with our son. He's doing quite well...but I still want to help him financially...it's just our parental instincts.
But, for now...I have to concentrate on my health...I want to get my health back, so my husband and I are able to enjoy our lives again.

You gave your daughter a great start...you took care of her needs for 26 years...you're a good Dad..but you deserve to take care of yourself.
Posted 5/30/2016 12:17 AM (GMT 0)
Hi Jody, I'm sorry you weren't treated completely the first go round and that you miss you daughter terribly. I do not have children, so I haven't experienced what you are going through. You sound like a great dad and it might be hard for your daughter to see her "rock" not as strong as she's known you to be. I know it was hard for me to see my strong dad become elderly. Like other's have said, she may not get it. I have loved ones in my life that still don't :( But my focus is on getting better, so should you! You are number one now :)

I too, see Julia Greenspan. She will use both herbal and antibiotics (if you choose.) She also is now doing LDI. Testing for Lyme/co's and other blood tests will be with Igenex, Labcorp and clinical diagnosis as well. She will not dismiss you like your PCP. You are lucky insurance covers her! My tests are covered, but not her office visits.

She is very busy, so don't be surprised to get office appointments minimum 3 months out and sometimes it takes a few days for them to get back to you if you have questions about your treatment. If your insurance covers it, be sure to also test for EBV, CMV, Candida, etc. I just found out I tested very high for EBV and I think that has been my main culprit for my crushing fatigue. I wish I had tested for this months ago.
Posted 5/30/2016 1:28 PM (GMT 0)
Thank you to everyone that replied. My daughter came over last night after work at around 9pm and we shared some food and watched some of the "old" Disney movies she loved as a child. There was a marathon of old movies last night and she enjoyed watching a few. We avoided conversation about Lyme, her boyfriend who has had no car for the past 3 months and relies on her to bring him to work every single day etc. He has a junky Jeep that has broken down multiple times - and this time it's a $3000 fix and he does not have the money. So she doubles the stress on her 2006 Honda (Which I have fixed several times to the tune of over several thousand the past year. I'm alone at home today on Memorial day with no one- and have no friends or family except my daughter. I have a brother in Maryland and we do speak each week- but he does not get it about Lyme at all. If I mention my daughter he gets very angry because he says she should at age 26 realize how much I have done for her and that overall pretty much raised her, even though her mother did have 3 days a week with her during her childhood. My co-workers have zero interest in being friends after work. Most probably think I would be a burden if they befriended me. I can still walk, talk, and do most activities anyone else can- I just get very tired sometimes and have trouble walking long distances. So if this is the hand I am being dealt- it is what it is. No one ever worries about me. I'm not seeking attention, but it would be nice to know that someone cares and maybe wonders if I am ok. I know my daughter loves me a lot. Because I am Jewish- she was just able to go to Israel on a "Birthright" trip 100% free. She was flown to Israel out of JFK in NYC and went with a group who also "won" the birthright tour. She said most places were guest houses (Kibbutz) and were Spartan but were places to "Crash" after all the tours of Tel Aviv, Jerusalem, Dead Sea, and other historical sites. When she flew back with the tour from Israel to JFK- the jet was late and she was unable to make her connector flight back to Boston for me to pick her up. Lucky for her I am always thinking ahead and I knew she would not make her connector from JFK to BOS, so I texted her on facebook before she left Israel and told her I would drive from Northeast CT to JFK and meet her there and drive her home. She said yes- as neither of us wanted her stuck from 10pm to 6am next day waiting on standby for a flight. She had already been up 25 hours when she arrived to JFK. The drive up and home was 5 hours each way due to construction. Not fun. She made it a point that she bought me more souvenirs than anyone else because she loves me. She knows how to make me tear up.

I would love to start dating again. I hate living alone. I'm a very kind, caring, and sensitive person. I don't need much and am not materialistic at all. I am afraid Lyme is an STD. That makes me feel that I have no right meeting a woman again as I do not want to transmit Lyme or Co's to her. I know I first need to heal or at least get Lyme stabilized and feel better. I worry too as I do not know what tests are covered at Julia Greenspan's clinic in Amherst NH. I know my visits are covered by Harvard Pilgrim insurance and the co-pay is $30. I also know Harvard Pilgrim will not cover the Igenex tests. As to the others I will hve to ask Julia as I do not know what she would test me for- but I have no doubt that her clinical diagnosis will be Lyme and likely Co's too. I hate being alone esp at Holidays :( last Christmas My daughter was already living with her BF and I spent Christmas eve alone and she only visited on Christmas day for 2 hours as they had to visit his relatives too. He acted like he did NOT want to be at my home and I could easily sense it. I've been nothing but extremely nice to him. The only time on facebook he IM'd me was when my daughter was in Israel and it was very small talk. He would not get together for the 10 days my daughter was on vacation even tho I invited him to dinner out.

It's raining so I cannot take Rocky for a walk at least now. I will try to stay busy and maybe even popm in a Kundalini yoga dvd as I am bored to death. Thank you everyone for your advice. I'm feeling pretty hopeless today. No one worry about me ever being suicidal. I'm not that kind of person and love my daughter too much to ever think of such a thing. I do get very sad a lot though being alone.
Posted 5/30/2016 4:01 PM (GMT 0)
There are many that are alone today. And I mean really alone. Your daughter is still living and you get maybe infrequent visits or calls, but there are those that don't get that at all, because their only child is gone forever.

Whenever I get to feeling down in the dumps and lonely, I take a trip to the hospital and see the babies born that are going to be put up for adoption. Or the old man in his hospital bed very ill because of the loss of his wife that he was married to for over 50 years. He is literally dying from a broken heart. And the burn victims - my God the pain that they are in is comparable to nothing! These make me look and say I am blessed.
Posted 5/30/2016 4:04 PM (GMT 0)
jnoller56 - Your daughter is 26 - I think you need to let her live her life...but that also includes not giving her so many hand-outs.
As I said earlier, I have a 23 year old son...and we were very close when he was growing up.
But, i consider the 20's to be a selfish time of life. I told myself that if he isn't around much, that he will be back when he's in his 30's.

Don't smother her now...you will just push her away...

Have you looked into lyme support groups where you live...or in a nearby city?

As far as lyme being sexually transmitted...it very well could be. The bacteria has been found in both seminal fluid and vaginal secretions. IF you do meet someone, I suggest using protection...and being open with her about lyme disease.
Posted 5/30/2016 4:33 PM (GMT 0)
I so agree with Girlie. You do not want to start a co-dependent relationship with your daughter. She will run like the wind from you.

Love, but don't smother.

You need to find your own life.

My Mom told me that the love for a child is the only love that grows into separation. You raise them, you don't own them. You help them be on their own when they take off out of the nest.

If you think "gifts" or "money" will tie her to you, you are just inviting an enabling situation.

I really think a support group would be wonderful for you. A singles support group, a lyme support group, a basket weaving group. Get out and do something with your life.

Set the example for your daughter on how to be independent and happy.

Don't show her that you HAVE TO have someone. You will have her going from boyfriend to boyfriend. Show her how to love yourself and be secure in that.
Posted 5/30/2016 5:13 PM (GMT 0)
"My Mom told me that the love for a child is the only love that grows into separation. You raise them, you don't own them. You help them be on their own when they take off out of the nest. "
So true, PeteZa.

My husband came home from work one day and told me about a co-worker who has a 30 year old living with them...and not working - doesn't want to move out.
He said...as much as we miss our son...it is healthy that he moved out on his own at 21 years old. He is a confident young man and wants to make us proud. We are lucky parents.


Do we miss him? you betcha. Do we worry sometimes? yup. But, we know that it's supposed to be this way.

jnoller - the hardest part for you will be making that break, and changing the dynamic of your relationship with your daughter. But, in the long run - it may change your relationship....for the better.
✚ New Topic ✚ Reply