I've read "Cure Unknown", then began reading online, and found this site where I am learning more. But I'd really like some input.
I have probably had neuroborreliosis for 15 years now, with peripheral nerve and cranial nerve involvement. I think cognitive stuff, too. I had a positive lyme test Western Blot IgM with negative IgG. My home doc tested my immune system, and I have an immunodeficience of IgG. So, first question:
Has anybody else been told they have an immune deficiency? And if so, have they been treated for it?
Next. The lyme doc I found said that I'm going to need very aggressive treatment, but I could start with oral. In January I began 200mg of doxycycline twice a day and Plaquenil 200 twice a day.
I had a major Herx, and continued to feel, well, not well.
Second month he added oral Rifampin, and I could barely hold down food.
On the phone, I've been relayed the message through his asst that I'm to start zithromax, though I'm having trouble reaching the office to find out more and to actually get the prescription phoned to my pharmacy.
In the past, I've been treated for sinus infections and felt really well. I think these treatments were really helping with the lyme. Biaxin and Ceftin have always made me feel better for a few months at a time, and then stopped.
I have a local MD who is lyme literate, but not a specialist, and who says he doesn't understand the zithromax, so I should keep trying to get through to my lyme doctor to find out more about why he's choosing it.
All my doctors locally seem aware of chronic lyme, whether they've treated it or not, and most say that oral doxycycline should be as good as IV, but that if I want to be careful, I should let them put the IV in, as they want.
So, is this a common protocol? If we want to get the stuff out of my brain and peripheral nerves and get all forms--spirochete, the round globules, and the cysts, shouldn't I be on something that would get the cysts, too?
What would be a common way to begin this crusade against the bug?
Oh, I have exposure to Ehrlichiosis, too, according to the Igenex, granulocytic--and my white blood cell count is low. I'm not sure what that changes, if anything.
I've hesitated with IV, but I do want to be well, and if that's the best way to get this bugger out, I'm willing.
Any thoughts on how to proceed? What to ask?
Thank you in advance.
Posts: 17 | From new york | Registered: Nov 2008
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This is a link I could find to the updated 2008 guidelines. I printed this out and read it and use it as a guideline for talking to my doctor about my treatment.
Good luck.
-------------------- Judy G. Posts: 122 | From Minnesota | Registered: Dec 2008
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posted
Thank you, I'm going to print it out right now.
Posts: 17 | From new york | Registered: Nov 2008
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I agree. The best thing you can read is the Burrascano Guidelines. Make them your Bible. Memorize them.
Lyme disease compromises the immune system. So, as long as you have lyme, I expect you will have an immune deficiency.
Get rid of the lyme, and the problem should resolve. When you treat for lyme, you do all you can to strengthen the immune system. You will read that in Burrascano. That's why no drinking alcohol, no smoking, exercise program required, etc. It is all to build up the immune system back to normal so it can do its job of fighting infections for you again.
The lyme disease and coinfections overwhelm the immune system. The lyme treatment helps the immune system to get back on top of the situation.
When you go to the Burrascano document on-line, do an on-line search for the word "immune" and you will see all the things he says about this aspect of lyme. You can search for any other word this way also, and read up on any subject you want regarding lyme treatment.
Zithromax is an important drug in the treatment of lyme disease and the lyme co-infections, according to my now famous lyme doc.
He started me on flagyl and zithromax when I first went to him (to kill lyme in both forms) since my previous doc had only treated me with amoxicillin for 2 years. Unfortunately for me, the zith gave me hives.
He also uses zith and mepron to kill babesiosis. I belive both of these are common lyme treatment combos.
There are many drugs the docs commonly use. It all depends on what diseases the patient has, the patient's drug sensitivities, history of previous treatment, treatment plateaus, etc. You have to keep changing the drugs used to kill these diseases each time you plateau.
You don't usually start out with a cyst buster, but eventually docs usually add them.
All the meds you named are commonly used by the lyme docs to treat us.
When my white blood cell count got low (this is from the antibiotic treatment--it can cause the body to sense that it doesn't need to make white blood cells anymore), my lyme doc had me take Transfer Factor. It brought it right up in 2 weeks.
If you can't get the white count back up, you will be told to stop antibiotic treatment until it comes back up. Otherwise, you would be too prone to catching infections. Your white cells fight invaiders--bacteria, etc.
I never had to stop treatment thanks to the Transfer Factor. (It is bovine--cow's--colostrum and is full of immunities that can be, evidently, transfered to us in the Transfer Factor capsules. Same principle as when the mother gives the baby her immunities when breastfeeding.)
Regarding what questions to ask, if you are talking about asking your lyme doc questions, I would just focus on everything he says to you. Take notes to help you remember. Ask any questions needed to make everything he is saying clear to you.
I would just want to be sure he follows the Burrascano lyme treatment guidelines. You can always ask him if he follows Burrascano. That is important to know.
Posts: 9931 | From Maryland | Registered: Dec 2007
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