I am new to this site. I was diagnosed with Lupus and Rheumatoid Arthritis in 2004 and keep getting worse with both diseases since. I have exhausted all meds except for chemotherapy. I have always felt like something is not right. I am not a typical Lupus patient. I have multiple odd symptoms and they are different from my friends that also have it.
Then my husband and I were watching a show on TV a few weeks back about mystery diagnoses and this girl had Lyme Disease. I was shocked because my story was identical. I started researching and have found that Lyme can cause a "Lyme induced Lupus" and even RA. I am so excited that I may have this. Sounds sick, but it's better than having Lupus that is just worsening and worsening. I know that there is not a cure for Lyme, but I still may hope for a better quality of life.
I was tested at my family doctors in 2004 when they were trying to figure out what was wrong with me. I had been to New Jersey and Pennsylvania Poconos 2 years in a row, plus I live in northern Michigan. My doc thought for sure that I had Lyme and not Lupus, but the "test" came back negative. He said it was a basic test and referred me to a rheumatologist who went with the Lupus thing. I got worse and they added the Rheumatoid Arthritis diagnosis. I am still getting worse.
I can't even tell you how many symtpoms of Lyme that I have just from surfing this website. My rheumatologist had quit for 2 months now and is opening a new office today. I see him tomorrow at 5pm. When I spoke to him about my theory he sounded intrigued and didn't know that I had not been previously screened, other than the basic test. (He is my 3rd rheumy dr).
My question is what do I ask him to test? What step do I take next? Is he an appropriate dr to go to? I am even more confused thatn when I was diagnosed with Lupus. What are all the symptoms? Any help would be great!
Thanks so much!
I am glad you saw the show on Lyme disease. Many people who have Lyme were first diagnosed with other diseases, including CFS, Fibromyalgia, MS, Lupus and ALS. I think it is definitely worth checking into the possibility you may have Lyme. Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
Lyme disease is the number one vector-borne disease in the US and the second fastest growing infectious disease in the US after AIDS. It is in every state, including Michigan.
When Lyme disease is a possibility, it is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable and the one most doctors run first.
Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.
Are you in MI? I know of one Lyme doctor who is in Saginaw. Would you like his name?
We can understand your wanting to know if you have Lyme or not. You want validation and answers for what you have gone through. Hang in there okay? Good help is available.
Thank you so much! I am so excited, a little nervous. You are both so wonderful to give this information and support. I have about 90% of these symptoms, plus more that I can post later. My main complaints right now besides those are pain, great fatigue, ears ringing, ear cartil. pain, eye pain with movement, etc.
Yes, I am in Michigan. We work in Southeast Michigan called Taylor and rent a townhouse here. Our home is in Clare County about 1 hour from Saginaw, so I would LOVE the number for that doc. I have to step out right now, but will post later. Just wanted to thank you and get that number.
I went to my rheumatologist today and told him everything going on. He said the problem is that Lupus and Lyme are similar; hard to catch on paper and almost identical symptoms. He is at a loss on what to do next. He said it is very possible that it may be inducing the Lupus. So, I told him about the western blot test and the IGENEX lab. He wrote a script for it but didn't know what to order. So, we called that lab and they said to get the western blot and PCR. I went to the local hospital and they drew the western blot but said that the PCR is a spinal fluid test only. They also said that my insurance won't approve for IGENEX to do it. I have to send it to their lab first and "wait and see". I guess it was a watse of time. I will see what test shows. I have read here that a lot of labs vary with sensitivity.
My doc also wrote a script for Doxycycline 100mg twice per day. He said why wait for the results since they will probably be inconclusive. Is this a high enough mg for Lyme? He said yes, but I don't think he really knows enough about LD. He had that lost look but was very open to this idea.
I pray that this works because my next step with the Lupus is chemotherapy and I don't want to do it.
Has anyone had any experiences with getting their insurance company to approve the tests at IGENEX?
Tickker - Should I see that Dr Ledtke in Saginaw or is their a super, super doc out of state? My husband and I agreed that it would be worth a flight to New York or wherever to get the best. What do you think?
Thank you in advance,
Hi Leslie. It is good that your doctor wants to try, but 200 mg of Doxy daily is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily.
Contact your insurance company and see what needs to be done to have the IgeneX tests covered as in-network. You will likely have to pay up front, but then they should reimburse you for however much they will cover. The majority of Lyme doctors do not take insurance because they often do not get reimbursed. People usually pay up front and submit the bills for reimbursement. If you do not get satisfactory answers, I suggest writing a letter to the CEO of the insurance company and sending it certified mail return receipt requested. End the letter with "Can you help?" I would be very surprised if you did not get a response.
Regarding the doctor, all of the NY doctors come highly recommended. If you are willing to travel you may want to see one of them. They are Dr. Kenneth Liegner in Armonk; Dr. Richard Horowitz in Hyde Park; and Dr. Joseph Burrascano in East Hampton. Another member posted that Dr. Burrascano is not taking new patients at this time.
I made an appt with Dr. Ledtke in Saginaw, on the waiting list. They don't give appt times. Possibly I can get in about 4 months due to cancellation list. I will call the NY dr's on Monday. Maybe I could get in earlier. How awful to wait so long. I guess they are few and far between.
I have not taken that Doxy, why bother if the mg is too low. I will update you all with any news.
Thanks for your help, it means so much!
I hope you get that appointment soon. Waiting is so hard.
Today my son-in-law (35) was told he tested positive for lupus. He has the symptoms. But they do match the lyme. I am trying to get them to at least have the Igenex blood testing. But so far, they don't want to. He is relieved to at least have some answer. I think he probably looks at me and what I have gone thru and thinks lupus would be easier.
I know doxy 200 a day is not enough but I wonder if it would at least hold the lyme at bay if it is lyme. I think calling the lyme dr back and asking their opinion is a good idea.
Let us all know what you find out.
I told my husband tonight that I actually feel like I am winning this lyme war. Don't give up. I know you must be very discouraged, but God is with you. He never puts more on us than we can handle. Lean on him.
Just an update. My western blot from the local lab came back negative. They will not test for the PCR (?) or other co-infections. My Dr. ordered it, but the lab states that it is not their protocol to do any further tests after the Elisa is negative. They did me a "favor" by running the western blot. They also refuse to draw and ship my blood to IGenex in California. I told them that I will just pay for it and they said it is against their poliy. My husband and I are very exhausted and just agreed to pay for the tests and now we cannot get the lab to send the blood! This is incredible. I feel like a junkie or something begging for things. This system-wide lab stinks anyways, when I was diagnosed with Lupus, the initial tests came back negative 2X and I refused to take the meds. My doc confided in me that he hates our lab and he sent my blood to a well known lab in California, can't remember the name. Well, it was positive, very positive. That amazed me. These labs are not reliable and it is a crime.
So, my next step is to go to a local infectious disease doc. I am so sick and frustrated. I am getting sicker all the time. My husband and I commute from northern Michigan to southern Michigan for work. we work for 6 days, then have 8 off. These are 12 hour shifts. I can barely get through my work week and then literally sleep for the 8 days. I have a very low quality of life. It is not a choice to quit work for 2 reasons: one is that I would feel as though I have given up and two because my husband is going back to get his masters degree in about 7 months and I have to carry the insurance, etc. The only option is to get better and I cannot believe that it is this difficult to do in modern day America!!! Aggghhhh!
I will definitely update with any new info, don't think there will be much since I have hit these dead ends. Thanks for letting me vent!
Leslie, I live in southeast Michigan too and have Lyme Disease. I couldn't get into Dr. Ledke for a long time either. I go to a Dr. in Grand Rapids - he is wonderful and very Lyme literate. I got his name by going to the
Lyme Disease Association website - lymediseaseassociation.org - go to the Dr. referral section. There are 2 listed in Michigan - Dr. Ledtke and my Dr. Good luck.
I too had 2 negative Western Blots done through the local hospital. When I had the Western Blot that was sent to Igenex it came up a very strong positive - in fact I met the State of New York and the CDC guidelines for Lyme! Good luck and keep us informed of your progress.
I contacted the ins co again and I am having my doctor do an appeal. It finally sunk in what Ticker told me about getting reimbursed by the ins for IGeneX. They are sending me the Lyme panel kit # 5010. It costs $390 up front and I will hope for reimbursement. I gave my doc all the info today and he is working on it. It's funny, he just switched to a new office and was offered the same healthcare ins that I have. He knew not to take it and upgrade! So, by the time that I receive the kit from IGeneX, I will know what my ins wants to do. Either way, I am running the tests. My doc said that it is still a possibility that I have Lyme but he thinks it is bad Lupus. We both agreed that it is uncanny to have so many symptoms of it. I don't think he wants me to get false hopes!
I am also going to find that doc in Grand Rapids and make an appt. Thank you for your help.
Are you doing ok with your treatment choice?
I am doing pretty good on the treatment that my LLMD put me on. I was on 600 mgs of Doxycycline for 5 weeks - then switched to IV Rocephin for 4 weeks after that because that high of a dose of Doxy made me nauseous after awhile. I go to the LLMD every week and he does some things to detox my body. It really helps.
I no longer have tremors and have my energy back. Most of my issues were TMJ, throat pain, teeth pain, ear pain, etc. I still have some of those symptoms depending on the day but they are getting manageable. I see my LLMD Thursday and we will discuss whether or not to continue the antibiotics or not. I have only had Lyme 9 months but it progressed farther than it should have because it wasn't diagnosed until May.
Let me know if you can't get the name of the Grand Rapids Dr. and I will help you further. Good luck and you are NOT alone. I will keep you in my daily prayers.
Thank you for your support! I learn so much from every single person. I just learned today that the steroids that I take will make it almost impossible to test positive. I have been taking them for years now. I spoke to a lyme assoc rep and she was awesome. If I don't have Lyme, then I sure learned a lot to help others.
Just an update:
I tested negative at the hospital lab. My doctor and husband fought to have my blood sent to IGenex. We finally drew and sent it Sept 6. It was POSITIVE!!! I cannot believe it. Maybe I can get my life back. I cried for a few minutes when it came back. My doc is not promising that my Lupus and RA will go away, but he thinks that I will "control" it now. Like, not go blind and have to take that IV chemo. I have never gone to a LD doc, still on waiting list. My doc and I have just learned from this website. If it weren't for all of you and your great advice, I would have never been tested, etc.
I am treating with Doxy to start, I am up to 200mg per day (5th day). I am going slow because my stomach is already raw and has bled before. I guess we are trying that for 6 weeks because we don't know what to do after that! I am starting 300mg/day soon. I would think that I would need tested again. Just wanted to update you guys. I guess it was pretty positive too. I will get a copy tomorrow and post the results.
Thanks so much!!!