posted
so i'm currently just on doxy hyclate twice a day which i know isn't enough to help me because the majority of my symptoms are in my brain (crawling sensations, bad fog, forgetfulness, pain, eye twitching) which i'm assuming means the disease has passed the "blood brain barrier." i'm not sure what to do - every day i'm afraid. i have insurance, but my main doc who diagnosed me is pretty conventional and just threw antibiotics at me with no other options. i'm sure i need intravenous, but i'm not sure if insurance will even cover any of that? i'm sorry, i know there are probably a million previous posts covering this topic (and if you could point me in the direction of them, that would be wonderful). every day my symptoms seem to get worse. i'm wondering if there is anything natural i can do in the meantime to keep the problems at bay (personally i think i have a bad case of bartonella)? thank you all in advance.
Posts: 39 | From marlborough, ct | Registered: Nov 2009
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
pm sent.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Breaking up this post so all can read it:
so i'm currently just on doxy hyclate twice a day which i know isn't enough to help me because the majority of my symptoms are in my brain
(crawling sensations, bad fog, forgetfulness, pain, eye twitching)
which i'm assuming means the disease has passed the "blood brain barrier."
i'm not sure what to do - every day i'm afraid. i have insurance, but my main doc who diagnosed me is pretty conventional and just threw antibiotics at me with no other options.
i'm sure i need intravenous, but i'm not sure if insurance will even cover any of that? i'm sorry, i know there are probably a million previous posts covering this topic (and if you could point me in the direction of them, that would be wonderful).
every day my symptoms seem to get worse. i'm wondering if there is anything natural i can do in the meantime to keep the problems at bay
(personally i think i have a bad case of bartonella)? thank you all in advance.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
sorry if it was "unreadable" the first time, my brain isn't exactly on the ball these days.
Posts: 39 | From marlborough, ct | Registered: Nov 2009
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Lyme gets past the blood-brain barrier for all of us within a day or so. So, you are just a typical case of lyme.
Be happy your doc was willing to put you on medication. Now, find a lyme doctor to really go after your disease.
You want a lyme doctor because you need an expert to get rid of this disease. Often, IV is not necessary. I had lyme undiagnosed for at least 10 years and I did well on oral medications alone. I got rid of lyme, babesiosis and bartonella taking only oral medications. That was almost 7 years ago now, so I really was cured with orals alone.
The most important thing to know about this disease is that it is extremely complex. So, for that reason, the doc is the key to getting rid of it.
Find the most experienced, knowledgeable lyme doctor you can. Many doctors treat lyme disease, but only a few know enough to get rid of it for a person.
Your job is to find such a doc. You want a doc who has gotten rid of lyme for at least 3 people. Lyme support groups can tell you who knows enough to get rid of lyme for a person.
Once you get to that good lyme doc, he will decide whether or not to put you on IV. You want to be with an expert when you go on IV so that your time on IV is not wasted.
So, don't even ask your regular doc for IV.
Generally, insurance will pay for IV for 4 weeks only. And, that is only for people who get a positive lyme test according to the CDC criteria.
Lyme patients need IV for much longer than 4 weeks, so going on IV is an expensive deal. You will most likely pay for the IV costs after the first 4 weeks.
Let's hope your good lyme doc has success with oral medications in your case. Remember, the doc is the key. A good lyme doc will put you on combinations of antibiotics. That's how you get rid of lyme disease--not on just one med at a time.
Even with IV, you should be on more than one med at a time. A regular doc doesn't know that, so going on IV with a regular doctor is just a waste of time and money.
Your symptoms will get worse as long as your treatment is inadequate. So, you are basically experiencing inadequate treatment right now.
Get to a good lyme doc and that will reverse. The best docs have a long waiting list--generally 3 months or more to get in with them.
Have you read the Burrascano Lyme Treatment Guidelines? That is the best thing you can do--become an educated lyme patient.
Starting on page 27 he tells you the nutritional supplements that benefit lyme patients. You can begin taking these now while you wait to get in with your good lyme doc.
Supplements will help your body fight the disease, but don't expect any substantial reversal of symptoms without combinations of antibiotics.
The Burrascano protocol is a 4-pronged approach:
antibiotics supplements diet exercise (1 hour of weight lifting every other day)
All 4 prongs are needed to get well. So, don't ignore the exercise requirement.
Once you are with a good lyme doc, the diet is very important. Follow the dietary rules to avoid getting intestinal yeast from the high dose combinations of meds the lyme doc will prescribe for you.
Anxiety and fear are a big part of this disease. The best thing you can do for yourself is research the doctors and get yourself a great lyme doctor.
See "Support Groups" on the left side of the page. Call a number of them to discuss the doctors people are having success with.
This is the thing you need to do at this point. I wish you all the best. Let us know how we can help you and we will do all we can to help guide you through this thing.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF - this is exactly the kind of advice i needed to hear. thank you so much for taking the time to respond.
I understand that finding an LLMD is key, and am well on my way to finding one. I am hopeful to hear about your success using various oral medications, as I started to feel like IV antibiotics were the only way to really get to the lyme.
I am interested to read up on the Burrascano treatment, and am ready to begin the journey of educating myself more on this illness.
Thank you again, I will keep you all posted!
Posts: 39 | From marlborough, ct | Registered: Nov 2009
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