Lymes? real real sick. Help

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godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 8/13/2012 1:31 PM (GMT -6)   
back in late february(live in oklahoma panhandle and have dog and cat)I noticed a about 3 inch circular bite on my leg. It did not hurt and was not raised. Had a dark pink small solid circle and a lighter pink complete circle around it. It was a little warm to the touch, but not swollen. faded away about 1 week later. I just brushed it off as a spider bite. 2 weeks later I had 1 hour of violent shaking. Could not get it stopped. Covered with blankets. Scary. then 2 months later had high fever, sore throat and dry cough. went to doctor and got antibiotics. Did not get better. I have been real sick for 3 months non stop. Constant chest tightness, severe fatigue, nausea on and off, air hunger type feeling in upper chest and lately my vision is blurry all the time.Also have been seeing white spots some. Have had complete heart test, gallbladder, GERD, upper scope test all negative. had western blot test. Only 41 IGG positive. Doctor said I dont have lymes. Im so frustrated and so sick all the time. What do I do now. Only have Oklahoma medicaid. Have to stay in oklahoma and PCP has to refer me. Im so miserable. Please help

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 14784
   Posted 8/13/2012 3:38 PM (GMT -6)   
Hi God lives,
I am so sorry that you even have a need to be here, but I'm glad you found us!! Please start off by reading through our "New to Lyme? Start here!" thread at the top of the forum, as it will probably answer a lot of questions for you.

Next, for help in finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Dan's Mother at:phassan@optonline.net

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

You will want to find an ILADS (International Lyme And Associated Diseases Society) doctor. The ILADS site is another great place to read to get you started on your Lyme journey. www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

The rash is the skin form of the infection, and as you have found out, only the beginning. So read all that you can about these infections, as those that know more can help themselves better, and with these incredibly complex infections, we need all the help we can get!

We have a really great search option as well - on the right hand side of the blue bar that has the log off button. In order to keep your inquiries to those related to this forum, just put the word "Lyme" in every time you use the search feature.

Welcome to our little spot!!
Treating with Acupuncture, Traditional & Modern Chinese Medicine & Western Herbs. Before tx, I had all but 20 of the symptoms on the "Master Symptom List"

"Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP

Questions about what I've posted or just have questions? Please email me!!! Click on the blue envelope under my screen name!

Shabbychic
Regular Member


Date Joined Jul 2012
Total Posts : 395
   Posted 8/13/2012 3:39 PM (GMT -6)   
Sounds like Lyme to me. Read through the information in the 'New to Lyme' thread. You will need to find a Lyme Literate Doctor (LLMD) in your area that will help you. There should be info on how to do that in the above-mentioned post. I, like many others on here have spent numerous hours doing research on Lyme and it's co-infections. That air-hunger issue is specific to a co-infection and I want to say its Erlicha, but I'm not positive. I have Bartonella and I know it's not that one. At any rate, Lyme disease is an immune response inhibitor which means the bacteria inhibits production of antibodies which is why you are not testing positive for it. There are bands that are specific and not specific for Lyme and if you have a Lyme specific band present you have Lyme disease regardless of whether or not ANY other bands are present. Again, there is information on specific bands and their meaning in the 'New to Lyme' thread. It's a time consuming process to research and find doctors and get the help you need. It is frustrating at times. Hang in there! There is help and you can get better!! Use this board to vent frustrations--it's why it's here. Best of luck!

Garfield48
Regular Member


Date Joined Feb 2012
Total Posts : 143
   Posted 8/13/2012 8:32 PM (GMT -6)   
Glad you found the group and hope you can locate a lime literate doc somewhere near you who will do a clinical assessment and not just go by the labtest. I am one of those people who has Lyme but I do not test positive on the Western Blot most likely because of pre-existing autoimmune issues. (only have 1 positive band like you which means it can be Lyme but it can also be other things so really it doesn't rule out Lyme but isn't a strong positive by that test.)

(I did test positive on the urine antibiotic challenge test (IGENEX) and have very low CD57 count which generally is not used as a screening test for Lyme per se but is an indicator of immune response. (Low count is an indication of active Lyme infection).

My LLND would probably say the fact that you feel so crappy with the things you describe and the other tests have come back negative would be an indicator toward Lyme.

Best wishes in finding a doc with more knowledge soon.
Healing since Jan 5 2012

Azithromycin, HH, Artemesia, Nattokinase, lyme tincture, adrenal tincture, acupuncture & Zhi Bai Di Huang Wan, probiotics, L-glutamine, nature-throid (hashimoto's thyroiditis). Past (bactrim, probenecid, cefdinir)

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 8/13/2012 9:39 PM (GMT -6)   
Thanks Garfield48. Im going to OK city tomorrow to the OU medical center ER. My doctor actually says I can get better test there. I want to make sure it is not lung related.(cause my chest hurts so bad)They might can do another western blot test on me. We live in a town of 1500 in rural OK. Ive been sick straight for 3 months. I had to take a leave of absence at work. Cant do anything without feeling sick and nauseas. Chest hurts and is tight all the time. I dont know if your a Christian, but I am. Say a prayer for me please. My name is Marcia. Thank you,God Bless

Garfield48
Regular Member


Date Joined Feb 2012
Total Posts : 143
   Posted 8/13/2012 10:07 PM (GMT -6)   
Prayer done Marcia. Good luck.
Healing since Jan 5 2012

Azithromycin, HH, Artemesia, Nattokinase, lyme tincture, adrenal tincture, acupuncture & Zhi Bai Di Huang Wan, probiotics, L-glutamine, nature-throid (hashimoto's thyroiditis). Past (bactrim, probenecid, cefdinir)

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 8/17/2012 7:30 PM (GMT -6)   
Had another lymes and Erlichiosis test. Ive started a 21 day doxycycline. With having the bullyseye rash, I will continue with believing its lymes and go to a lymes doctor if doxy does not help. Thanks for your prayers.

jwjjtt
Regular Member


Date Joined Jul 2012
Total Posts : 52
   Posted 8/17/2012 9:19 PM (GMT -6)   
hi God lives,

Not a doctor, but my understanding from reading is that the bullseye rash is proof positive of Lyme and that LLMD's often won't bother with any other testing if you've had one...

I'm fairly new to all the Lyme stuff, and I'm real open to being corrected by any other forum members - because I'd love to know if I'm off-track in my thinking here...

Prayer done.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 8/17/2012 10:28 PM (GMT -6)   
Hi godlives38 - welcome!

There is unfortunately A LOT of misinformation out there about lyme disease as it is for some unknown reason an extremely controversial illness. I know it can be overwhelming - we're here to help however we can! I believe the bull's eye rash is a definite diagnostic marker for lyme disease. Please understand a few things - the typical western blot is not a reliable test. Some doctors may tell you otherwise, but, simply put, they're wrong. Also, a long time ago someone had this idea that a short course of one kind of antibiotic would completely eradicate this infection. This is very, very often NOT the case. I know it's not pleasant information to hear, but it is better for you in the long run to know this upfront, and to know that you may meet a good amount of resistance from doctors if you point out that you need further treatment. This is why it's best to find a way to see a LLMD - they'll understand that, for many reasons, these types of infections are difficult to eradicate (though the sooner you get to it, the easier), and treatment should be followed until symptoms improve. I hope you get better soon and say better, of course, but please do keep in the back of your mind at all times that should you get better and then start to develop symptoms later down the line, even if you're told that it couldn't possibly still be lyme disease, it very well could.

None of this is to scare you - it's just so important to stay on top of this stuff because so many of us go into chronic, difficult to treat infections because we're not given proper information or treatment. Also, make sure you're taking probiotics or eating fermented foods along with the antibiotics - it's so important for our immune systems to replenish the good bacteria that the antibiotics will kill off, plus, that could be contributing to your nausea as well. Best of luck - I said a prayer for you and please don't hesitate to ask any questions you have - that's what we're here for!
Co-Moderator, Lyme Disease Forum

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 8/23/2012 8:55 PM (GMT -6)   
Just got the positive IGG test for Ehrlichiosis. Which, to me confirms Lyme cause I had the bullseye rash. Its starting to all make since with my symptoms. Going to Lyme doc this Monday. I an taking 200 mg of doxycycline for 21 days. Its been about 9 days on the medicine. Was worse at first. Feel pretty nauseous in the morning but it gets better my about 9. At about 5 in the afternoon, I feel awful. I pretty much just lay around all day. I feel like an old woman. Im ready for this to be over. At least I have a positive test now. The air hunger, chest pain, fatigue, nausea, sore throat, swollen glands on my throat are the worse. The chills and sweats are not as bad now. Ill take any improvement. Its been 6 months since I saw the rash. Hopefully I will be well soon. Thanks everyone for your help and prayers.

flowergal
Regular Member


Date Joined Sep 2011
Total Posts : 390
   Posted 8/24/2012 10:22 AM (GMT -6)   
Are you taking the doxy with food? I had to do it that way for my stomach to tolerate it. Also those other symptoms sound like Babesia ...which I have and is treated with Mepron and
Doxy together. I finally lost the chills, sore throat etc and feel like the meds are really helping that. Hang in there you will get some relief as your treatment progresses.
Late Lyme, few tick bites. Treatment started July 2011, Doxy 9 days, Amoxcillian a month, cipro/zithromax 3 mnths, Mepron/zithromax now Doxy and Mepron, Vit D, B 12, Vit C, garlic and Artemenisin. . Muscle spasms, brain fog, heart palpitations. Taking cortisol for low adrenal function. Hypothyroidism.

borderlyme
Forum Moderator


Date Joined Jul 2011
Total Posts : 1347
   Posted 8/24/2012 10:27 PM (GMT -6)   
Are you taking probiotics? When we take these antibiotics for a long time we need really hefty doses of probiotics to replace the good bacteria that the antibiotics kill along with the bad bacteria - that usually helps stomach issues that come along with the abx.

I'm glad you finally figured out what's wrong - that's the first, and sometimes the hardest step! You're absolutely right - the bull's eye rash by itself is enough to clinically diagnose lyme disease. Keep us posted on your doctor visit, and be sure to set up a good detoxing strategy - it's so helpful to deal with the feeling worse before you feel better part of all of this!
Co-Moderator, Lyme Disease Forum

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 8/25/2012 2:44 PM (GMT -6)   
If I have Babesia, do I have to have a positive test to get treatment? I read that Mepron is real expensive. Do you think my medicaid would cover it? The possibilities of more medicine with its side effects and cost are stressing me out. Is 200 mg a day enough for lymes and ehrlichiosis?

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 9/12/2012 1:03 PM (GMT -6)   
Update. I have been on doxy for 4 weeks. Some things are better.Chest pain and sweating are still bad. Fell tired and sick all the time though. My LLMD has put me on Flagyl and zithromax. My upper and lower back are hurting now. Also my Vitamin D is still low. Also my Globulin is a little low. Is this from the antibiotics or something else. These last test have been done by my regular PCP. THAT is the only way my insurance will pay for it. My PCP ordered another WB. It showed only 41 IGG positive again, so now she is convinced that I do not have Lyme. This is so frustrating. My LLMD says I do, even though the test are negative. My erhlichiolsis test was positve. It was 140. Does all this mean that I have STARRI, and HGG? I just feel awful. I cant work, and I am in bed most of the time.

PennyPru
Regular Member


Date Joined Jul 2012
Total Posts : 149
   Posted 9/12/2012 7:53 PM (GMT -6)   
God Lives,
So sorry you are still not feeling well and you're going through so much with your 2 docs. I just found out my LLMD visits will not be covered at all until I meet a $4k deductible. Yikes!

At any rate, before my LLMD I was on 100 mg doxy bid (2x a day) for a month then when I stopped I rebounded. My new doc, an LLMD now has me on 200 mg dox bid and I'm feeling better. I have low vit d, iron and coq10 and other stuff. I'm taking 10,000 IUs of Vit D a day now, I just have to take it at a different time than my abx. It takes a few months to get our Vit D back up, and also the prescription Vit D is not as good as OTC Vit D3. (D3 has more bioavailability than the rx D2).

Did you have an Igenex test done for Lyme, or just a general lab? Many regular Western Blots are not as specific or sensitive as Igenex testing, so there are MANY false negatives. (myself included, finally positive through Igx).

Have you read Burrascanos' treatment guidelines? You may find some info here helpful
www.ilads.org/burrascano_0905.html

ARe you doing the skin brushing and detox baths suggested in the "Welcome" file? They seem to help me a lot.

As far as determining is it's STARI or regular Lyme, I wouldn't worry about that. Your primary only knows what he/she's been trained, so it's not there fault that they don't understand or that they don't know. Sounds like Lyme and you are being treated for Lyme by an LLMD.

I wonder if you could benefit from some herbs to help you? I am on abx but am about to start some of Buhner's protocol to help with other issues that abx are not fixing for me. Perhaps your LLMD is aware of Buhner's Lyme treatment protocol? (Mine is.) If not, he has a great book called "Healing Lyme" that helped me get a better understanding of what my body is doing. I can't speak from experience about the protocol yet, but I've read a lot of people have been helped by it, so I thought it worth mentioning to you.

So sorry you are struggling. It's going to get better. Sending you a BIG HEALING HUG!!!!!!
Penny4Them

Never give up, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 9/15/2012 10:14 PM (GMT -6)   
Thank you so much. Ill check that web site. Back still hurts but not as bad. Most pains have been on my right side. Is this odd or normal? My right jaw and right ear are really bad. Cant get relief. Also Chest all over hurts. Feels also like I have the flu all the time. Cant even go to the grocery store without feeling like I have a wet blanket around me. I get flush and feverish feeling when I go out of the house. Its been 5 months like this. Is this normal? No real good days in a long time. Been on medicine for 6 weeks now.

Marthas Vineyard
Regular Member


Date Joined Sep 2012
Total Posts : 106
   Posted 9/16/2012 5:38 PM (GMT -6)   
Are you allergic to penicillin? Like Amoxy? I prefer it to Doxy. The doxy is for people who are allergic.
Amoxy was great for my daughter who got it. Being allergic to it myself I got stuck with doxy and it made me feel worse and after months and months on it it did not work for me.
Find a health food store and get the best colloidal silver you can find. It comes in a liquid form with a dropper. It is a natural abx. Harmless and can help it the beginning stages.

godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 10/2/2012 4:36 PM (GMT -6)   
UPDATE. Still very sick. Chest hurts all the time. Cannot talk for more than 5 minutes without feeling Im going to faint. Try to get up and do housework. Cant do that. Fatigue is not the right word. Its beyond that. Im now on Bactrim(2x a day) Next week she is adding Mepron. The chills are all the time. Low grade fever at night. Feels like I have something sitting on my chest all the time. I cant seem to find anyone who has had this chest stuff all the time. My heart and lungs have always checked out. I have no life anymore.

seniubr11
Regular Member


Date Joined Jul 2012
Total Posts : 44
   Posted 10/2/2012 10:33 PM (GMT -6)   
godlives38-you and other posts are making me cry, I feel your pain, it sucks so bad, I can't even move right now, I can barely take my meds, my whole body hurts, I am so depressed, my mom and friends said they will take me to the psych hospital but I'm trying to stay out, it does me no good there. I've been in there twice from this already. I want to die so bad. I can't fight this anymore, but I don't have the guts or the strenght to take my life. I wish I did. But my brother is injured from a sucide attempt and he tells me to be strong, but I tell him he doesn't know what it feels like to be depressed and have lyme. I feel selfish for saying this, but I just don't care anymore. I'm going on 10 years of this illness.

I know it's worse than fatigue, you have no strength. I've been having the air hunger a lot worse lately, not so much chest pain. I'm also starting Mepron probably tomorrow, hopefully it will do something for me.

I also have no life, I watch seasons come and go unable to do any activities, I just sit here by myself rotting away. I'm now out of work, even when I was working , I was sick I would cry all the time at work until I was literally getting sick and passing out, they wouldn't let me work anymore.
 
It would be so much easier if I had a lyme friend close to me right now, but I don't , I have reached out to all the support groups around me but they no longer have them, the only one about one hour away from me, won't contact me back.

I hope it ends soon, I can't take much more.

Post Edited (seniubr11) : 10/2/2012 9:51:11 PM (GMT-6)


godlives38
New Member


Date Joined Jul 2012
Total Posts : 16
   Posted 10/2/2012 11:33 PM (GMT -6)   
I am so sorry.i cant imagine going that long.have you tried antidepressants.i have celexa but i have not tried it yet.i am concernex about getting addicted and my liver.my husband and family have been amazing.i feel like i have terminal cancer.i pray and cry alot.i wonder why me.for 10 years i had a rare pelvic nerve condition.had surgery and then improved.i thought i could handle anything after that.this is worse.i know you understand.i just cant believe this all is from a tick.im thankful i saw the rash but im kicking myself for not going in sooner.if you want to private email me you can or if you want to get on facebook,you can.dmbryant100@hotmail.com.blessings to you
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