Hi Marks,Welcome to Lymenet.
Sorry you're having a rough time right now. I can certainly identify with your head pressure & pain.
With antibiotics you will start to feel better ---------eventually.
I don't want to give you false hope, nor do I want to minimize your frustration in any way at all.
But you probably have a very high bacterial load if you've had LD for 32 years. As I'm sure you already know, most feel worse in the beginning of treatment because of the intense die-off.
Also, Doxy penetrates fatty tissues including the nerves. At high enough doses according to Dr. B.'s Treatment Guidelines, it penetrates the blood brain barrier.
When meds goes to the brain, you can feel really bad, flu-like or have a weird depression.
Hope you'll feel comfortable in discussing antidepressants with you LLMD if the time ever comes that you think they could benefit you. Or, you could even research natural ones like Same-E from the health food store.
For many, Lyme & depression seem to go together! Besides, depression is a chemical imbalance of the brain-------not a character weakness.
I had a severe chemical depression diagnosed with brain mapping or BEAM (Brain Electrical Activity Mapping). Dr. Eric B. said no amount of counseling would help me; that it would take a stimulating antidepressant like Wellbutrin to help.
Back to Doxy:
Doxy can also cause intra-cranial pressure. Always consult your LLMD if the pain gets too bad. I was an out-of-town patient and would fax my LLMD with any questions or information that needed to be relayed.
Many LLMDs start treatment with Doxy because it will take care of both LD & the tick-borne coinfection, Erlichiosis.
I have no clue if you have Erlichiosis, but it is within the realm of possibility that the Doxy is killing both Lyme & Erlichiosis. That would certainly be a double-whammy for you.
That's another confusing thing for most of us. The symptoms of co-infections overlap with Lyme symptoms and the tests for co-infections are worse than LD tests. It takes time & perseverance to figure these things out.
I hope you've had a chance to compare your Doxy doses to what Dr. B.'s Treatment Guidelines recommend & see if they are high enough to kill LD. Too low of a dose will actually make you feel worse & you won't be making any progress.
If needed, scroll up to Treepatrol's Links & click on Dr. Joseph B.'s Treatment Guidelines.
As a precaution, my first LLMD gave me Diflucan to get rid of any yeast. He said that you won't get rid of LD, if you have yeast. As best I can remember he told me to take it on the weekends------away from ABX.
Also, Dr. B.'s Treatment Guidelines mention mycoplasmas, such as mycoplasma fermantans; however, there are other strains.
My LLMD just ran a Mycoplasma test through my insurance. My adult son's was high, but mine was not high. Don't know how reliable these tests are either.
Anyway, try to see Lyme Disease treatment as a process.
When I first when to the LLMD, I thought he would test for co-infections & treat them immediately; and I thought he would give me Flagyl as a cyst buster right off the bat, etc., etc.,,,
In other words I first thought everything was treated at the first visit. I was so wrong. He said if he gave me Flagyl too soon, it would throw me for a loop.
He was right.
Yes, it's overwhelming, but just take it one step at a time. That's all any of us can do.
I've had an infected root canal tooth, which showed up on x-ray, removed. I've also had all my amalgams removed & done chelation about 10 years ago; yet, I know I need to do more chelation. Finances hold me back right now.
Well, didn't mean to discourage you more, but LD can affect every organ in the body.
Here's a fascinating 33-page chart of symptoms with journal citations which was handed out at our Support Group Meeting.
It's in pdf file form so I hope you'll get a chance to print it out:
Here's the link below:
You'll need to scroll down the page to the green indicator next to SYMPTOMS & click.
http://www.lymeinfo.net/lymefiles.html
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Another booklet you may want to print out at your leisure is "Lyme - The Basics":
www.LymePa.org
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What I've learned most from reading Lymenet is to eventually treat for the co-infections & mycoplasmas. And, every doctor's protocol is different & each patient's needs are different.
Favorite Lymenet quote:
``If the specific disease has not been targeted yet, then it will continue to cause problems.'' Simple, but profound.
I was sick for l3 years & in such pain and half-dead by the time I found an LLMD. He treated the LD first to get me out of pain.
I've been on ABX for almost 2 years including 2 months of Mepron with Zithromax.
I'll probably have to be re-treated for Babesia because the life cycle of Babesia is 4 months. Dr. B.'s Guidelines also recommend 4 - 6 months of Babesia treatment.
As for the KMT22--------if you want to, you can also post a NEW TOPIC asking more about it. I read about that & I'd love to try it.
Lymenet is a great place to come for support, especially in the beginning. I don't know how folks make it on their own.
This is such a complicated disease and finding answers becomes overwhelming when you're at your sickest.
Besides, we're pretty much guinea pigs in all this because research in LD is about 20 years BEHIND.
Keep asking questions & reading on Lymenet. You can also add in alternative therapies with your treatment.
I want my husband to build an ozone tent for home use as soon as we can. "Orion" has posted instructions for that. If you want the link to that post, just ask and I'll find it for you.
We want you to get well in the safeest way possible. Just take it one day at a time.
Is there a Support Group near you? Those can be of immense help.
Hope this helps.
Take Care,
Jan
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