mcrh.org
*Home>>>Autoimmune Diseases

Nobody can figure out what's happening to my sister's health. Suggestions?


My 43yo sister's health has been steadily declining over the past 5 years. She was initially diagnosed with advanced Lyme disease. She also received a Lyme vaccine prior that has since been pulled from the market. She now has an autoimmune problem, has severe disc degeneration (8 herniated discs and no disc in one cervical location). She has severe pain, taking serious pain meds, losing weight rapidly because food makes her feel worse with hypertensive episodes. She sleeps most days and now looks gaunt. I feel she's dying a slow death because doctors readily admit the are puzzled and not sure what to do for her. Is there any kind of a facility where a team of doctors and nutritionists try to work together to figure out puzzling medication conditions like this when other doctors are giving up?

There are two schools of thought among doctors: Those who think Lyme Disease is easily cured and never becomes chronic, and those who understand aggressive treatment may be needed because Lyme Disease can be complex and effect multiple body systems. A good doctor will test for all of the tick-borne diseases, as well as other parasites and other possible causes of illness, so that the patient can be treated appropriately.
There's a great lab that can test for all of these tick-borne diseases:
http://www.igenex.com/
The thing that makes this testing different than the standard test most doctors use, is that it's more comprehensive. The patient takes 5 days of antibiotics, and collects urine samples in addition to having blood drawn for testing. Check their site for more detailed info.
Like your sister, I've had Lyme Disease for several years, and progressively became so sick that I was either bedfast or needed an electric wheelchair to get around. Before finding a doctor who would treat my illness, I too, lost a lot of weight, suffered a lot of pain, and slept almost 22 hours a day, in addition to many other symptoms. I also was diagnosed with Babesia (Babesiosis), which is also transmitted by tick bite. I have recently recieved 4 months of intense antibiotic treatment (Rocephin IV twice daily, Azithromycin 250 mg twice daily, Flagyl 750 mg twice weekly, Mepron for babesia, and cholestyramine (to absorb toxins released by the bacteria as they die). I am now out of the wheelchair, I can drive my car again, and am able to do light chores around the house. The pain is much better. I had a two month break from the antibiotics, and just went back onto the same antibiotic regimen. Treatment typically lasts from 1-4 years. I am finally getting better, after all these years of illness, and after experiencing the frustration of going to doctors who either didn't believe I had Lyme Disease, didn't believe Lyme Disease could make people that sick, or didn't know how to properly treat it. Even as an RN, I found that some doctors wouldn't even bother to do the testing for Lyme Disease, even after I described being bitten by a tick, developing the rash around the tick bite, and developing fevers, chills, fatigue, memory loss, difficulty concentrating, nausea, muscle and joint pain, as well as several other symptoms, becoming so ill I had to leave my job.
The bacteria that causes Lyme Disease can encapsulate and hide in organs, therefore making it sometimes difficult to diagnose and treat. There are also 100 different strains of the bacteria in the U.S., 300 identified around the world.
Here's another good web site that helps explain a lot of elements about Lyme Disease and other tick borne diseases: http://www.ilads.org/
I don't know where your sister lives, but she needs to find a doctor who has experience treating Lyme Disease. It's worth traveling to see a doctor to get the labs done and get the treatment going, if she indeed has Lyme Disease.
On the ILADS web site (mentioned above) there is a page that has links to Lyme Disease organizations: http://www.ilads.org/iladlinks.html
Try calling or emailing the organizations listed to see if they can give you the names and contact info on doctors who treat Lyme Disease, nearest to your sister. As a starting point, here's the email address and phone number for the Southeastern Pennsylvania Lyme Disease Association: Lymepa@Lymepa.org or call 610-388-7333.

Best of luck to your sister!

I am praying for an answer for you & your sister, and that she will be blessed with a miracle. May God's peace be with you both. In his name...

There are doctors involved in research but we would need to know your location and how far she can travel. It sounds like some sort of bone necrossis, and there are several autoimmune or blood disorders that could cause that. My Mother has Hyperhomocyistenemia and I have Antiphosphlipid Syndrome. Both can be causes of Necrossis. There are probably others I am giving you a link to a page that can help explain a little of this.

If doctors are saying she "had" Lyme disease but no longer does, they are of the IDSA school that believes Lyme is easily cured. The people who believe Lyme can be chronic, elusive, and challenging to treat are at ILADS, International Lyme and Associated Diseases Society. Go to their website and look for treatment guidelines. Read. Seek an ILADS-Lyme specialist for open-minded consideration of Lyme as a possibility. She may have more than one thing going on, but if Lyme is part of the mix, it makes sense to address it.

Tags
  Baby Care   Baby Blues   AVM   Avian Influenza   Avascular Necrosis   Autoimmune Diseases   Autism   Atrial Fibrillation   Athlete Foot   Atherosclerosis   Ataxia   Astigmatism
Related information
  • Enlarged Lymphnodes, Fever or Unknow origin... HELP!?

    Lumps are bad. However, as a Hodgkins Lymphoma survivor, I had those lumps and then they went away, they reappeared later in the groin area, thought it was a hernia, then learned about cancer. CT ...

  • Diabetes...is this a real progress?

    This is extremely interesting and if true, fabulous news!! It would help millions of people worldwide. However, I wonder if those with type one who become "cured" could later develop ty...

  • Any connection with 20 nail dystrophy and Celiac Disease?

    I don't know of any connection between this particular nail disorder and celiac disease but I do know that the condition of my mom's nails improved greatly when she went gluten-free. For...

  • Does anyone have Hashimoto鈥檚 Disease?

    Your weight will normalize once your thyroid hormone gets under control, it takes about a month for the medication to build up in your blood. There are some side affects but it differs from person...

  • Is lupus the only disease that causes the butterfly rash?

    It is seen in systemic lupus erythematosus, esp. after the patient's face has been exposed to sunlight, and in seborrheic dermatitis, tuberous sclerosis, and dermatomyositis.

    ...
  • Can you have more than one autoimmune diseases at the same time?

    Yes, it is possible. It sounds like you do have Lupus, I know that there are many many doctors out there that think its sooo uncommon for someone to have it, I'm telling you I know it exists! ...

  • What is the cure for autoimmune diseases?

    visit ...

  • Autoimmune diseases and inflammation?

    Auto immune disease is your body attacking other parts of your body. The result of that can be inflammation as your body is attacked. Anything that can reduce inflammation should help the side-ef...

  •  

    Categories--Copyright/IP Policy--Contact Webmaster