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CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/27/2010 2:01 PM (GMT -6)   
Hello. I do not know if what I have is Lyme. I do not remember being bitten or any kind of rash. I woke up one morning in May '08 unable to get out of bed. dr put me on prednisone. I felt better but when I tapered I was worse. I have been off and on pred for 2 years now. good on, worse each time I get off of it. this time I am so sick I can hardly go up & down stairs. anyway, after 4 primary physicians, 6 specialists and a chiropractor, I am at the end of my rope. my chiro suggested lyme a year ago. I thought the chances were pretty low. our local news paper had an article on the front page last week on lyme in our area. I started looking into it and I do have many of the complications of neuralgic lyme including epilepsy, twitching, muscle jumps and cognitive issues. also I have severe fatigue, unexplained chest pains (left side) headaches, joint pain, and muscle fatigue and weakness. I have been dx-ed with fibromyalgia, lupus, epilepsy, narcolepsy, and chronic fatigue syndrome. I am now taking tetracycline for an antibiotic challenge. I see my pcp tomorrow and I am taking the treatment guidelines by Dr. Burrascano. I am going to do the western blot IGg and IGm at IGENX. Does anyone have any other advice for me?

My PCP is no a LLMD but she is very open minded and probably willing to treat me if it is indead lyme. I am willing to see a LLMD but I so not have any money to pay for treatment and I am on state medicaid. so I want to do this with insurance and not out of pocket unless I absolutely have to.

So any advice on educating my PCP? or tests I should ask for. I am planning on asking her to do a CD-57 from the LabCorp in our city.

thanks for all the information here.

m

edited to add: I have been on the antibiotic challenge for a week and a 1/2 and have felt worse and worse as each day goes by. more and more twitching and fatigue. is this a sign that it may actually be lyme or does everybody feel this way?<!-- Edit -->
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


yarniac
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/27/2010 2:03 PM (GMT -6)   
Thank you CajunGrl.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/27/2010 2:13 PM (GMT -6)   
You're welcome:)
 
You will want your PCP to check for co-infections. This is very important to do because if you have a co-infection, it needs to be treated first. Here is a list of co-infections and their symptoms:

Description, symptoms, and treatments of co-infections:

Babesiosis:- is a malaria-like protozoa illness that invades, infects, and kills the red blood cells. Symptoms include fatigue, night sweats, chills, fever, shortness of breath, heart palpitations, headache, dark urine, muscle pain, joint pain, nausea, and jaundice. Treatment is an anti-malarial combined with an antibiotic--often Mepron with Zithromax (or Biaxin or Ketek).

Ehrlichiosis:- is a bacterial infection that invades and infects the white blood cells. There are two types of Ehrlichiosis: Human Monocytic Ehrlichiosis (HME) and Human Granulocytic Ehrlichiosis (HGE). Symptoms include malaise, fever,
sweating, nausea, dry cough, headache, muscle aches and
pain. Treatment is most often Doxycycline.

Bartonella:- also known as cat-scratch fever is a bacterial infection. Symptoms include swollen, painful lymph nodes, muscle and/or joint pain, nausea, vomiting, chills, anxiety, insomnia, red rashes. Treatment is often Levaquin or Rifampin.

Mycoplasma:- is a bacterial infection. Symptoms include fatigue, breathing problems,
headache, muscle pain and soreness, nausea, lymph node pain, and cognitive problems. Treatment
is usually Doxycycline, Minocycline, Azithromycin, Clarithromycin, or Ciprofloxacin.

For more information on the co-infections, see "Everything You Need To know about Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner and Dr. Joseph Burrascano's Lyme Treatment Guidelines at:
www.ilads.org/burrascano_0905.html


Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4399
   Posted 7/27/2010 2:53 PM (GMT -6)   
Welcome aboard... sorry you have Lyme but glad you found this support group.

I don't know what else to add - CG basically coverd it. The coinfection tests may be negative even if you do have one or more of them, too, so sometimes the only way to find out what coinfections you have is to go to an LLMD who can determine clinically which coinfections are present.

Wishing you luck on your Lyme journey,
-Razzle
Chronic Lyme Disease, Bartonella (clinical dx only), Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, etc.; G-Tube; TPN via PICC (trying again to wean off the TPN).
Meds:  IV Cipro, Heparin (to flush PICC line), Singulair, Claritin, Domperidone, Colloidal Silver, probiotics, digestive enzymes, Milk Thistle & other liver support herbs, Magnesium, homeopathy.


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35849
   Posted 7/27/2010 3:13 PM (GMT -6)   
Welcome to our forum, Yarniac!!!
Like Razzle I am sorry you are sick, but you have found a good place to get/receive support, advice, & understanding!
From the symptoms you have, I would be surprised if you didn't have tick-born infections - and testing positive for them isn't as easy as it seems, as these little buggers like to hide in the tissues.

I have had to use my gp to get a least a little help with my infections & the best thing I did to help the two of us out is to take in a copy of Dr. Burrascano's "Advanced Topics on Lyme Disease". You can do an internet search & find it pretty easily.

AS for your feeling worse each day as you do the abx challenge - it is most likely that you are experiencing a 'herx' - a die off of bacteria. Detoxing is the only way (from what I understand) to alleviate your symptoms & keep from feeling even more ill. You can find all the info you need to start detoxing in the thread at the top of the forum titled "New to Lyme? Start here", you probably have everything you need already in your house! Dry skin brushing is also important to help your body rid itself of these toxins.

Hope this helps a little!
Even the mightiest oak tree was once a little nut who held it's ground!!! May we all find peace along the journey to find healing. "Absence of proof is not proof of absence" - Dr. Edwin Masters, great LLMD & researcher -RIP
Trav


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/27/2010 4:13 PM (GMT -6)   
Yarniac,

You may also want to check to see if you have viruses. Many of us with Lyme Disease, have viruses also. You may want to check for Epstein Barr Virus, HHV6 and Cytomegalovirus. Some members have even been known to have Parvo Virus. These viruses can make you feel like you have a terrible flu. it is always wise to get tested for these.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum


yarniac
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 6:39 AM (GMT -6)   
Thank you all so much for your responses. Traveler - I have a copy of the guidelines printed and ready to take with me. I also printed out the ilads guidelines as well although they are not as detailed.

One good sign is that this doctor had referred me to the chiropractor that thought I had lyme in the first place. they have respect for each other and he (the chiropractor) will be a great advocate for me. In fact he lead a lyme support group last night. it was the first meeting. I was shocked. it was standing room only. they had to get more chairs. for there not being any lyme in this area that is a big turn out.

Most of the lyme patients I met last night see a llmd in Mo. I have his card and I am calling today. they said not to wait for the test results. I am hoping for financial reasons that most of my treatment can be ordered thru my PCP so my insurance will cover it. well as long as they are willing to cover it.

as far as testing other than the Igenx western blot, I saw in Dr. Burrascano's guidelines that he recommends the CD-57 thru LabCorp. we have a LabCorp here and I called them. they sent me a list of the tests run for lyme. is it worth my while since my insurance will cover it, to get other tests done there? I am only getting the W.B. IGg and IGm done at Igenx.

Again thank you so much. I will check in after my appointment with my PCP today and let you all know how it went.

yarniac
New Member


Date Joined Jul 2010
Total Posts : 11
   Posted 7/28/2010 1:27 PM (GMT -6)   
well, I went to see my doctor today. she wrote the order for the blood work to send to Igenex. I was careful not to push to hard on the lyme issue, but she did tell me a lot that I had read on ILADS' website. she prescribed me 4 weeks of doxycycline for an antibiotic challenge then I wait two weeks and have the blood drawn. She said she did not think that I have lyme, but is willing to test. She also said that she has 3 lyme patients on an "alternative" protocol. She then went into the 2 schools of thought on lyme treatment. So I asked what she thought about it. She told me that she just didn't know. She does not believe that all those patients who experience the same issues could be making it up & that there is something there. She thought that it could be a autoimmune response to having had the illness, but she would decide when she could see for herself the results from these other patients - that if antibiotics work long term that it would be the proof.

I am encouraged by this. It may be that educating her (bits at a time) and also getting guidance from a LLMD will benifit other lyme patients in my area. who knows?

so I will take the doxycycline for 4 weeks, go off for 2 weeks then send the test to Igenex. then ~ 2 weeks later I will get results.

yarniac
dx: Fibromyalgia, Epilepsy, Narcolepsy, Cataplexy. some unknown Neuro-Muscular disorder and possible lyme.
Prescription Meds: Darvocet, Lamictal, Zoloft, Trazadine, doxycycline, fluconizole, lodine.
Supplements: D3, magnesium, calcium, glucosamine, B12.

Post Edited (yarniac) : 7/28/2010 2:53:05 PM (GMT-6)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/28/2010 5:57 PM (GMT -6)   
Yarniac,

That is awesome. Please keep us updated on your journey.
Lyme disease, Fibromyalgia, Hashimoto's Thyroiditis, Adrenal Fatigue, Rheumatoid Arthritis(Just diagnosed)
Prescription Meds: Savella, Tramadol, Hydrocortisone, Plaquenil
Supplements: Thyro-complex, Magnesium, Calcium, Potassium, Folic Acid, Fish Oil, Vitamin C, Probiotics, GI Repair, Vitamin D 50,000IU and Joint Supplement

Co-Moderator Lyme Disease Forum

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