Hello, My son has had unexplained inflammation of his left lateral rectus muscle. He had an eye muscle biopsy in February and all test were benign. Interestingly, when this all began he started a course of Doxy for acne, and his eye began to improve almost immediately. I know that because he visibly had more control over movement of his left eye. After several months mobility then stabilized after initial improvement. The Doctor's paid no attention and in the meantime he was tested for Lyme. Negative but reactive for bands 41 (IGG), 45 (IGG), and 23 (IGM). I am seeking a Doctor familiar with Igenex testing because the Doxy was initially effective and I believe Lyme and other infections can manifest in the eye. He was treated twice with very high dose steroids which were useless and almost made it worse. So sorry for the long message but want to provide a condensed version in the event someone might have an answer. Thank you!
Posted by TF (Member # 14183) on :
How old is your son? We need to know age because many lyme doctors have age limits, and very, very few take young children.
If you suspect lyme, do NOT let any doctor give your son any steroids or immune suspressant medications unless it is a life or death issue. Steroids, etc. can make a case of lyme nearly uncurable and what could have been treated with oral medication can turn into a need for IV medication for months and months.
More severe illness also results from other causes of weakened defenses, such as from severe stress, immunosuppressant medications, and severe intercurrent illnesses. This is why steroids and other immunosuppressive medications are absolutely contraindicated in Lyme. This also includes intraarticular steroids. (p. 4)
"More evidence has accumulated indicating the severe detrimental effects of the concurrent use of immunosuppressants including steroids in the patient with active B. burgdorferi infection. Never give steroids or any other immunosuppressant to any patient who may even remotely be suffering from Lyme, or serious, permanent damage may result, especially if given for anything greater than a short course. If immunosuppressive therapy is absolutely necessary, then potent antibiotic treatment should begin at least 48 hours prior to the immunosuppressants." (p. 12)
If you want to get an Igenex test for lyme, you can call Igenex and ask which doctors in the Pittsburgh are requesting such tests for their patients. Then, go to one of those doctors.
However, if you son has many symptoms of lyme, you may as well get started with the process of getting him with the very best lyme doctor you can possibly afford.
Look at the symptom list on pages 9-10 of the Burrascano Guidelines. Make a list of every symptom he has. The more symptoms, the more likely he has lyme.
Lyme specialists mainly rely on symptoms to make the lyme diagnosis since the lyme tests are not very good. Even with Igenex, a person with lyme can get a negative test result. Read page 7 of Burrascano where he talks about the tests.
"Lyme Borreliosis (LB) is diagnosed clinically, as no currently available test, no matter the source or type, is definitive in ruling in or ruling out infection with these pathogens, or whether these infections are responsible for the patient's symptoms." (p. 7)
I will send you info on lyme doctors, however, without the age of the patient, many of them may be irrelevant to your case.
Welcome to LymeNet! We will help you here all we can.
Posted by hopingandpraying (Member # 9256) on :
Welcome to Lymenet!
PM sent with some names of LLMDs in OH & PA who see both children & adults. Also sent you a couple of names of Lyme-literate Ophthalmologists in PA.
Yes, the bacteria which cause Lyme disease, Borrelia burgdorferi, like connective tissue so they can affect the eyes.
Band 23 is Lyme-specific. Here is Dr. C's Western Blot explanation (he is one of the top LLMDs):
"In my clinical experience, if a patient has symptoms suspicious for Borreliosis, and has one or more of the following bands, there is a very high probability the patient has Borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93."
You didn't mention how old your son was. We need to know in order to send doctors' information to send you, because some Lyme doctors only treat adults, others just children while still others see both.
Your son needs to be evaluated and treated by a Lyme-literate doctor (LLMD). Non LLMDs have no clue about this horrible disease or its complex treatment!
A LLMD is one who has treated Lyme disease and the co-infections which come with it for many years and has gotten patients well. A good one will follow Dr. B's Guidelines, the "gold standard" for Lyme treatment.
Steroids are contraindicated for Lyme (see Dr. B's Guidelines), because they suppress the immune system allowing the Lyme bacteria to become entrenched deeper in the body thereby making the patient even sicker.
Unfortunately, LLMDs are far and few between. Your son needs to go where they are. At least half of all Lyme patients travel out-of-state for proper care.
Also most LLMDs do not accept insurance due to the politics surrounding this horrible disease. Read poster TF's explanation, "Why Lyme Doctors Don't Take Insurance":
Read the books written by the top LLMD, Dr. H, titled, "Why Can't I Get Better?" and his new one, "How Can I Get Better?". They are an excellent source of information.
Also read "Cure Unknown" by Pamela Weintraub. Get it at your local library or buy it used on Amazon.
Btw - I know you are new to Lymenet, but please break up your posts into 2-3 sentence paragraphs, as there are people on Lymenet who cannot read large blocks of text due to neurological problems from Lyme.
To do this click the pencil/paper icon, make your changes, then click "Edit Post". Thanks.
Posted by Tincup (Member # 5829) on :
Hey there in Pittsburg,
Sorry to hear about your son. Eye problems with Lyme are fairly common. Glad he saw some improvement on Doxycycline. That's a good start.
Might want to consider the possibility of Bartonella, which will also cause many eye problems. Info on Bartonella is here.
If you go to www.MarylandLyme.org and look at the menu to your left you will see "DOCTOR REFERRALS".
Click there to find the names and contact information for health care professionals treating Lyme & TBD's in your state (or any state).
There is also a page with support group information, one for alternative medical professionals, educational conferences across the country, labs and their contact information, one for mental health providers, MTHFR and Morgellons providers.
There is also a list of TBD with how to diagnose (testing), a list of symptoms for each disease and treatment info with links to the treatment guidelines.
Hope your son is back to normal real soon. Good luck!