My husband has been sick for close to 8 yrs. with a mystery something we are calling MS, for lack of a better diagnosis.
No memory of a bite or rash, but started with a bad "allergy season" and a fever with optic neuritis.
Since then, symptoms have included Bell's Palsy, urinary incontinence and urgency, constipation, various vision problems, difficulty with walking and balance, fatigue, irregular MRI's, and excessive back and abdominal pain.
4 Western blots have given different results and 2.5 yrs on and off doxy and others have yielded a mixture of side effects, marginal improvement, then major issues.
Our current doctor is LL, but also more of a generalist. He seems a little stumped, and I feel it's time for something new. Here is the question:
Is this lyme and/or coinfections, and is a true LLMD the best next stop? If not, what else is there? If so, who? All support and stories most appreciated.
Many thanks to all!
Posted by Snailhead (Member # 18091) on :
Hi, and welcome to the forum. You may want to re-post this over in the "medical" section (if you haven't already) to get more responses.
I have a dx of MS, and then found out a year later that I have Lyme, plus coinfections. What have your WB's revealed, as far as bands? Also, a second opinion from another LLMD never hurts.
I have alot of the same issues as your husband; I feel for you.
Posted by TF (Member # 14183) on :
Well, a first appt with a lyme doctor is expensive and the wait to get in is usually months.
Has your current doctor ever sent your husbands' blood to Igenex to be tested for lyme and coinfections?
If not, why not ask him to do that. Igenex is a tick borne disease specialty lab in California. The tests are expensive, but well worth it in my opinion.
If you decide to do this, be sure the blood is sent to Igenex early in the week and per their instructions (express mail). If the blood sits in the post office over the weekend, it will clump and you will get a negative test result.
Call Igenex to discuss exactly what tests to order and how to do everything.
Also, have you looked at the lyme disease symptom list in the Dr. Burrascano lyme treatment guidelines? They are here:
The symptom list starts on page 9. The more symptoms he has that are on the list, the more likely he has lyme disease and its coinfections. Bells palsy is a classic lyme symptom. Also, eventually, lyme begins to affect the brain. Have your husband look at those symptoms carefully.
The Burrascano Guidelines will also tell you what good lyme treatment looks like. Doxy is not enough.
If your husband has a number of the lyme symptoms, it is definitely well worth the cost to make an appt with a top notch lyme doctor who will diagnose him based on symptoms and use tests and other data as an adjunct. The lyme tests are not that reliable, missing many who actually have the disease.
Why not get a list of doctors in your area and call your lyme support groups (on left side of screen under "Support Groups") to get recommendations. Then, make an appointment with someone who is highly recommended.
I highly recommend a doctor who follows the Burrascano lyme disease treatment guidelines. Ask if the doc follows Burrascano when you call the office. If not, I recommend you look for another.
Burrascano's protocol has gotten me and a number of my friends and acquaintances well. He recommends high dose combination antibiotic therapy plus supplements and the herb artimesinin if babesiosis is suspected. Read it in his guidelines.
Rarely does a person have just lyme disease. The tick gives us a number of diseases with one bite. These are the so called coinfections. The treatment for each coinfection is different. The most common coinfections are babesiosis and bartonella. They also can be very difficult to get rid of.
I also never saw an attached tick or got a rash. So, I went undiagnosed for about 10 years. I had lyme, babesiosis, and bartonella.
Reading and studying the Burrascano Guidelines will give you and your husband your education on lyme disease.
It certainly can be misdiagnosed as MS and many other diseases.
Regular doctors think they know all about lyme disease, but the truth is they actually know nothing about it. It is an extremely complex illness that requires a lot of expertise to get rid of. Find a doctor who has treated many, many lyme patients and who has gotten them well.
Lyme disease can steal your life. It stole 5 years of mine. As the disease progresses, more bodily systems are affected and the symptoms pile on or get worse. If that is his medical history, lyme is a likely culprit.
Good for you for finding this site!
Posted by Abxnomore (Member # 18936) on :
Welcome to Lymenet Wellwife
I have sent you everything you need to help you find a Lyme literate medical doctor (LLMD)for your husband and info to learn more about this illness.
Please join in our discussion in medical, where we have many members ready to share their experience and knowledge about this illness with you.
[ 11-27-2009, 11:21 PM: Message edited by: Abxnomore ]
Posted by Meg (Member # 22) on :
I agree with TF, please contact your Support Group for your State. Link is in the leaves upper left on this page.
Posted by 22dreams (Member # 17846) on :
Hi Wellwife,
I'll PM you the name of an internal medicine Md in Manhattan who originally identified lyme clinically with my sister (when the doctor practiced for a time in Massachusetts).
Being integrative and familiar enough with lyme to clinically diagnose it, she may be a good doctor for your husband to see while he is waiting to see a LLMD. I'll provide you with a link to her website.
Good luck.
Posted by wellwife (Member # 23403) on :
Thanks for all the responses, everyone! For those of you recommending specific docs, LLMD or neuro, in the city, can you please PM me names and contact info if you haven't already? I think we've probably got enough knowledge and diagnostics for the moment -- and a pretty good primary care doc -- but need a good LLMD to get us on the right med trail.
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