posted
Newbe with a million and one questions & concerns. I am a senior citizen (74) and have had Lyme for 19 years (according to my count).
Have had progressive serious health problems for several years.
I have had the same neurologist all this time and he continues to say I have a neurological degenerative problem but he does not know the source of it.
He sent me to Mayo Clinic in 1997 & 1999, the State University Clinics in 2001 and all came back with diagnosis "UNDETERMINED".
I have had no less than 5 Western Blot tests and a spinal tap test over the years and they all have returned negative.
My daughter insisted I go to a LLMD ,which I did on Oct 22,2007.
Prior to my appointment I had a Western Blot (#6)done at IGenex Lab at his request. The results of that test are as follows:
IGM Result Negative CDC/NYS Result Negatine 18 kDa. ++ 22 kDa. - **23-25 kDa. -
28 kDa. - 30 kDa. - **31 kDa. IND
**34 kDa. - **39 kDa. IND **41 kDa. +
45 kDa. - 58 kDa. + 66 kDa -
73 kDa. - **83-93 kDa. -
IGG Result Negative CDC?NYS Result Negative
18 kDa - 22 kDa - **23-25 kDa
28 kDa - 30 kDa - **31 kDa -
**34 kDa - **39 kDa - **41 kDa +
45 kDa - 58 kDa - 66 kDa -
73 kDa - **83-93 kDa -
Based on these results and his clinical evaluation the LLMD stated Assessment: Borreliosis (Masterts disease)
Yesterday (11-02-07) I went to my primary doctor (whom I like and respect) and reviewed my new Western Blot and the LLMD Assessment and report with him.
I was very pleased with the time he spent with us and what I feel is a sincere interest in my welfare.
However, he was a great deal less enthusiastic in the LLMD's reading of the Western Blot.
He feels it is a real stretch to think that it confirms Lyme and that my symptoms & condition could certainly be caused by other than Lyme.
It is also his opinion from what he has seen and heard of, even if I have Lyme, my age and the time I feel I have had it, that I cannot receive any improvement.
I was pleased , however, that he is willing to do the testing and follow me for the LLMD.
When I returned from the LLMD I was very pumped up, needless to say today I am only somewhat optimistic.
My treatment instructions--(I don't feel I received were very clear) work up to 2 Doxy twice a day and Nystatin 2-4 four times a day.
I have taken 1 Doxy and 4 Nystatin for 2 days the next two days I took 1 doxy twice a day and 6 nystatin for 2 days
Today I plan to take 1 Doxy three times a day and 6 Nystatin a day.
I am taking the Doxy and Nystatin at different times of the day (is this proper)
I am taking the ABX's along with a handful of meds 3 times a day and with a handful of supplements 2 times a day.
(i would supply the list of both if helpful)
I am overwhelmed trying to schedule all this with some kind of properness.
For instance I'm confused the most effective way to take Doxy, with or without non dairy food. I have heard both ways is O K.
Are all LLMDs strong on supplement usage as mine?The following is a list he mentioned briefly and referred to in his literature.
Can you tell me their importance to my treatment and when to consider using them ( for problems or prevention)
others will answer the other questions that you have.
my LLMD restricts all supplements
BT
Posts: 299 | From New Hampshire | Registered: Jul 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Welcome.
Most MD's believe someone who was not treated for Lyme immediately and has had it for a while are just unfortunate and basically, untreatable, so your MD's reaction is what we expect. Fortunately, we have LLMD's who are willing to help us get better ... and we do!
If you take doxy with food, you will feel better. I was taking the Doxy twice daily, two twice daily.
Do not take doxy near any minerals ... take your supplements at another time of day.
You can take Nystatin with either the abx or the supplements.
Most LLMD's like you to take supplements. When Lyme gets this entrenched in our systems, we have to not only kill the bacteria, but strengthen our immune systems to become healthy.
Detoxing is also important. You need to eliminate the toxic bacteria as the abx kill them ... that is what the charcoal is for. Many like chlorella better than charcoal ... chlorella absorbs the toxins, but also provides health benefits. Charcoal must be taken away from everything as it absorbs meds, supplements, etc. along with the toxins.
Unless you have low thyroid, you don't need to take thyroid.
The L Tryptophan is for sleep if you have trouble sleeping.
No sugar and alcohol are very important. If you develop a candida problem due to abx, that in itself can make you feel bad, so you want to prevent an overgrowth.
Probiotics are important. Take them away from abx. You can take prebiotics, too, but I haven't seen them stressed as much as probiotics .... in fact, I think chlorella might be a prebiotic ...
You might want to list your other meds because we can't really tell you much without knowing what they are.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
welcome, glad you found us and finally have a diagnosis.
probiotics are EXTREMELY important if you're taking antibiotics. i cannot emphasize this enough.
my LLMD is big on supplements. our bodies are depleted, our immune systems severely undermined. we need all the help we can get. but, it is important to know which supplements to take. many people just load themselves up with too much stuff and it does more harm than good. read dr. burrascano's treatment guidelines to start. i'm sure they're somewhere in the newbie links.
i also agree that detox is of utmost importance. take things that bind toxins (which will also help relieve herxheimer reactions): chlorella, MSM, destroxin, pectin, etc. also, exercise if you can, rebound on the trampoline, get your lymph system moving.
i know this is all really overwhleming. one step at a time; you'll get there!
posted
Mastic gum was the only thing that helped my stomach, and to be totally honest, I didn't even realize it hurt until the pain went away on it - it had felt more like my heart or my lung.
I would consider this as a potential Lyme cofactor though:
This is what I'm dealing with. I have Lyme Disease and babesia, but I am convinced that this is also part of the mix. There are a few other electrosensitives on here, too. I'm convinced EMFs cause these infections to hang around.
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Welcome to Lymenet Rose!! I'm so glad you found us and have an LLMD.
The 18++ is significant for lyme and even Steere - a well known doctor of the IDSA (Infectious Disease Society of America) ilk has stated that this band NEVER shows up in controls. I'm not a doctor but this, in the presence of symptoms would convince me to proceed with treatment.
Lyme is a clinical diagnosis even though many M.D.'s don't seem to know this. LLMD's (lyme literate MD's) base diagnosis on symptoms and tests so it sounds like you are in good hands.
Spinal taps are said to be about 20% accurate for lyme disease so it is not unusual to have a negative spinal tap even if you have lyme disease. ELISA's are pretty useless according to several credible sources so one can't rely on them.
Anyone who has been sick for any length of time may well have a negative Western Blot since the Western Blot works by detecting antibodies against borrelia and does not detect the bacteria itself.
Lyme usually depresses the immune system making it difficult for our bodies to make antibodies and thus the sickest of us will often test negative even though we are teaming with infection.
Sometimes our bodies will start to make antibodies after we are on antibiotics (abx) for awhile and a previously negative test will turn positive. In any case, your response to treatment should help you and your doctor determine your status.
Sounds like you are doing a good job of working your way up on abx so that your body has time to adjust to the medication. No dairy with the doxy or for a few hours on either side if I recall correctly. Also, don't lay down after taking it for I think an hour but you should ask your pharmacist to be sure. I took doxy 200 mg 2X per day for quite awhile and expect to go back on it in the future. It is often used for lyme disease.
I am not a doctor and most of us here are not so please always follow your doctors instructions and always check with your LLMD for information about how to take your meds and supplements and which ones to take.
As others have said, detox and other supplementation is important. I check everything with my LLMD though so that I can be sure not to take something that will interact with my medication.
I don't know if all LLMD's are as strong on supplements as yours. I think some are and some are not. Mine is a top LLMD and he is good with supplements and realizes the need for heavy detox etc.., especially for some of us who don't detox very well on our own.
I'm so happy for you that you've finally found some help and have some hope now of getting better. Many in your situation have felt better in the first year and some take longer. The time it takes one to get better varies a great deal.
Learn as much as you can at your own pace and ask questions when you need help.
Best wishes for your improved health, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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bettyg
Unregistered
posted
hi rose,
yes , i can see why you are overwhemed;; i was too when i started 22 supplements 2nd llmd had me take.
first, write out a schedule of ALL MEDS with your llmd..
before you start, gather all together and split up or different times to take them!
i bouht 6 of those really large pill boxes they make.
i have 1 for breakfast,, lunch, supper/dinner
10 am, 3pm, and bedtime,.
ok, now get all the bottles for B,L,D and write them down and how many for each meal..
get those for 10 am, 3 pm, and bedtime together.
then ONCE A WEEK, i do my pills separating to different times, etc.
i do the one PILL FOR EACH meal before going onto the next meal.
so if i have B, L, D//SUPPER; I'LL TAKE THOSE 3 BOXES SIDE BY SIDE and fill each with their dosage.
then do the same on 10 am, 3 pm, and bedtime.
i also wrote on a SEPARATE PILL CALENDAR when i started and ended each med!
can someone help you to start with so you are doing this correctly?
I don't have a lot to add that the others haven't already covered except that I have a dx of LD from 1999 and Masters Disease also now.
I see a very knowledgable and understanding LLMD and I have seen very good results already.
Like you, I was infected a long time ago (for me it's been over 20 yrs.) and most drs didn't want anything to do with me
when I didn't respond the way they thought I should to what they were willing to do. DON'T LISTEN TO THEM!!
They really don't understand what we are living with -- no matter how nice they are.
Although I'm fairly new to the treatment end of this, I'm not so new to the disease.
I would be glad to answer any questions you might have for another long-time sufferer.
This stuff works it's way into every aspect of our lives!!!
I wish you luck on your road to recovery and hope that you will find peace along the way also. ~Traveler
-------------------- May we all find peace one day and may peace prevail on earth ~ Traveler Posts: 66 | From traveling the U.S. | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
WELCOME*)!*)! !*)!*)*!!)!
Our oldest members of our support group- heck, we had one woman in her 80s who had been diagnsoed Alzheimers and also had musical hallucinations. Both went away with IV Rocephin.
We also have the oldest woman long distance runner in California who maintains on oral Doxy and was doing great last time I saw her. She is in her 70's but is in, as befitting her description, incredible shape!!!!!!!!!! And runninG!!!!!!!!!!!!!!!!!!!!
Welcome to LymeNet, Best wishes, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Hi Rose,
Doxy should not be taken with calcium, that's why no dairy, but people often feel better when taking it with food.
Lots of good advice here.
Among other things, I would second Betty's advice to get one of those big pill boxes that have compartments for four times a day.
That way you can divide everything up ony once a week.
The probiotics are really very important, but need to be refrigerated. So if you put them in the pill box, you'll need to keep the whole box in the fridge.
Make sure you take the probiotics in between the oral antibiotics. Two hours before and after is best, but just getting them in you is what counts the most.
Keep in touch if you have more questions!
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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