After ten years of being blown off by countless smug doctors or misdiagnosed with illnesses I did not have (everything from MS to "fibromyalgia" to being pregnant -- I'm a 61 year-old male, the nurse had mixed up my file with a female patient - boy, was she embarrassed!), I FINALLY found an excellent LLMD who immediately diagnosed me with Lyme plus several related viruses.
In two years I went from looking into the best methods of suicide to regaining more than half my health and I'm still improving every day. I was soooo stubborn! I feel sorry for all those who accept the first worthless diagnosis and then just slowly die from Lyme not knowing what their illness really is (and that they are NOT a hypochondriac "wasting" doctors' time who could be treating truly ill patients!).
Recently, she called me in to be tested for Babesia WA-1. I had not been tested for it before as it is (was) "accepted knowledge" Babesia WA-1 was geographically localized and NEVER found in the Midwest (I'm in Kansas).
Apparently there was some seminar or paper she read that indicated Babesia WA-1 WAS,instead, wide spread and WAS present in the Midwest. She said she had tested 100 of her Lyme patients thus far (including ones declared "fully Lyme suppressed") and 80 tested positive for Babesia WA-1. I tested positive. She said she has many more to test and is doing them as fast as the lab will accept the tests. She suspects about 80% of the about 4,000 Lyme patients she has seen over the years will test positive.
She hopes this clears up the mystery why so many of her Lyme patients test as having Lyme fully suppressed (CD-57 number is quite high for instance) but most report they don't feel "cured"; just maybe 50% better. That describes me even though my CD-57 is only 30.
But almost all improved enough to return to work and again lead a normal life. BUT NOT back to feeling "really good" as they once did. She told me she "knew" she had been missing something important. She did not believe Lyme does permanent damage (as many LLMD's believe) and that was the problem. Se KNEW She was missing something as those 20% of the Lyme suppressed patients who did not have Babesia mostly reported regaining ALL of their health (and energy, etc.). She has her fingers crossed (so do I!)
Doctors in Babesia rich areas report quick results to treatment so she is really looking forward to retesting the first group of patients. I am fortunate to be placed in the second group of patients she is having tested 100 patients at a time (she has about 4,000 total patients to test).
Even though my CD-57 number is stuck at 30, I feel 95% better. That is a major mystery. What does CD-57 really test? I do now test negative for Bartonella. I guess that's important?? I know all my Lyme symptoms are down 80 to 95%.
She told me Babesia WA-1 treatments of her patients are so recent she doesn't have any second test results yet. But, based on the results of the same treatment in the few areas LLMD's thought Babesia WA-1 was confined to, she has me on 5 ml of Mepron combined with 250 mg of Zithromax twice a day.
I take the Mepron with a small scoop of Ben & Jerry's 100% fat ice cream. I read fat helps the body maximize absorption of the Mepron. So I bought Ben & Jerry's ice cream in spite of hating high fat foods. 10 ml a day of Mepron. Is that enough? I found a post that said their doctor had them on 750 ml for three weeks (about 35 ml a day). Is there anyone reading this post that knows if this is the best treatment for Babesia WA-1 and is 10 ml a day enough (along with 250 mg 2x day of Zithromax with B&J ice cream)?
Is there anyone reading this who knows the primary symptoms of Babesia WA-1 (so I know if I'm improving) or do I just have to get tested?
Are there any other co-infections that usually accompany Babesia WA-1 (that I should be tested for)?
After reaching the point of giving up, I found an LLMD who ran me through more tests than I thought existed. She is in her late 70's and cannot find a young doctor to absorb her knowledge and take over her practice. It has to be very lucrative. But money is not the problem.
She just had yet another doctor quit after one month before other doctors scared him away with tales of LLMD doctors being ruined and losing their careers. She'll be gone in a few more years and one more of the very few good LLMD's will be gone. The "dark side" continues to win. The state medical board was "helpful" enough to warn him what his future would probably be if he continued his plan of taking over the LLMD practice. They've sued her (and lost) so many times, they've given up on the (wanting to) retire LLMD. They just scare off any doctor she hires as soon as they learn his or her name. The AMA, state medical boards and several insurance company funded organizations are sooo "helpful". NOT!
But back to me. Anything else anyone can tell me about Babesia WA-1, I'd appreciate it very much. Yes, I have read through all the archives about Babesia so I don't need any of the basics or any info already listed there. First person experiences would be appreciated. For instance, I found nothing about mixing Mapron with ice cream. Are relapses common? Are you retested periodically as a safety measure?
Thanks much in advance!
Posted by SForsgren (Member # 7686) on :
I would look at Nutramedix Enula as well. I don't think Mepron + Zith is generally curative and many/most relapse with Babesia after that combo.
Posted by Lymetoo (Member # 743) on :
I'm so glad you finally found your answer. Many who relapse or never get over the Lyme are later found to have babesia....unless their first dr was a good LLMD who tested and treated for it right away.
ICE CREAM is NOT a good option for the fat. Has your dr discussed that you should be avoiding sugar and simple carbs and taking probiotics to avoid systemic yeast?
The CD-57 is a flawed test if you ask me. So many here have low test results and feel fine, or the opposite. Go figure.
Is your LLMD in Kansas?? Amazing find! I hope she finds someone to help out in her practice.
The Babesia WA-1 is a test, not the name of the illness, I don't think. It's all considered babesia.
I had babesia and got it in Texas, so I do believe it can be found anywhere you find ticks.
If the mepron/zith doesn't cure you, consider artemisinin with zith or clindamycin/quinine. I got rid of mine with those two combos.
I never used mepron.
Posted by lymednva (Member # 9098) on :
Babesia Wa-1 is a particular strain of Babs. As w0tm mentioned it has generally been thought to be restricted to the western states.
I find this post quite interesting since I believe I got Lyme as a child in OK. When I tested positive for Babs WA-1 I was taken aback.
I have only been to the west coast a few times in my life, and not really out where I would have been likely to have encountered ticks.
This answers my question about how I could test positive for this, yet not for any other tick-borne illnesses, including Lyme.
Of course, I've been sick so long my body quit making anti-bodies by my early 20's.
I take one teaspoon of Mepron and clarithromycin twice a day. I also take artemisinin three times a day. I've been on this protocol for almost 10 months and still have symptoms of Babs.
I hope to read more about what others are doing for treatment and their symptoms.
Posted by AliG (Member # 9734) on :
Too much sugar in Ben & Jerry's Ice Cream.
Try 2 Tbsp - peanut butter or 2 Tbsp butter or 2 Tbsp Marie's Salad Dressing.
There are posts here about alternative sources of fat WITHOUT all the sugar.
Good Luck, : Ali
Posted by tailz (Member # 10014) on :
You're getting better with antibiotics because of your gender. Heck, you can even get better eating ice cream? Wow.
These bug like the hormonal ups and downs of a woman's body. Too bad few women are in research. I'll be dead before a man cures me of my Lyme.
Posted by sixgoofykids (Member # 11141) on :
I don't know what 10 ml measures out to be ... I take two tsp. Mepron twice daily along with that amount of zith, plus artemisia and enula.
My primary babs symptoms are night sweats, air hunger, and heart palpitations. I hope finding the babs is your answer to getting well.
I do not know what kind of babs I have as I tested negative for it and was clinically diagnosed.
Posted by Angelica (Member # 15601) on :
I heard from someone connected with Igenex that the different types of Babesia can sometimes cross test. I first tested positive to WA-1. After finishing 4 month of Mepron and Zith I was reactive to Babesia Microti so I had to start treating again.
The other day I heard a LLMD say that he has had better results with patients taking two teaspoons of Mepron twice a day rather then just one teaspoon twice a day. He also now uses Enula along with the Mepron.
Posted by Michelle M (Member # 7200) on :
Babesia WA-1 was first "discovered" on the west coast but cases have been popping up all over. Not surprising since people travel, birds travel, and ticks travel.
A friend of mine on LymeNet has it -- our symptoms are eerily similar down to our brain lesions!!! -- and he lives in New YORK!!
I am pretty sure there is ZERO cross reactivity in testing. I.e., if you have only babesia WA-1, you will consistently test negative for babesia microti. And, the reverse is true.
I am not certain why Scott is giving you Nutramedix advice and telling you to disregard Mepron and Zithromax. First off, I am pretty sure he is not a doctor. (Someone please correct me if I am wrong about that.) The last I saw, Dr. Burrascano's guidelines called for Mepron + Zithromax, with an addition of Artemisinin, as SixGoofyKids posts.
I have NOT heard that such a combination doesn't work. In fact, just the opposite. I did have one relapse -- probably from not doing it long enough the first time.
Babesia WA-1 is I believe worse than babesia microti. I think it is reasonable to treat it for months, not weeks.
Symptoms may not be at ALL what you expect. For me I did not suspect I had it because I lacked the classic "sweats." Instead I had blinding migraines, mental confusion, altered vision. Over the course of treatment those became much better. I do not re-test but simply go on how I feel.
I would also caution you to take the mepron with a gigantic spoonful of peanut butter!! YUMM!! Now THAT'S some serious fat!
I cannot seriously believe your doctor will find that 80% of 4000 patients will be positive for babesia WA-1. However, I am not above being shocked. Now that would be a statistic to set the non-lyme world on its ear!
Michelle
Posted by Angelica (Member # 15601) on :
I did not believe the different types of babesia cross tested at times until I read it in a book on babesia in my doctors waiting room. A LLMD who is on the board of Igenex told me they cross test as well.
[ 26. May 2008, 10:39 PM: Message edited by: Angelica ]
Posted by von (Member # 8333) on :
Babesia WA1 was first found in WA state. Its name has changed to babesia duncani. (as per igenex)
Six weeks ago i finished 9 months of zithromax, art, and mepron (1 tsp 2X per day) It was the drug that has made the most improvement.....however I relapsed in 4 weeks after ending treatment... so back on the mepron. So for me the quest for a cure is ongoing.
Babesia duncani has a reputation for being difficult to treat.
MY SYMPTOMS: low grade fever a few days per week (cycle), anemia, fatigue, chest pain (dead center, nipple level) which may be air hunger? Sometimes I feel like I have to take very deep breaths. I NEVER had night sweats either.
Men get anemia much less often then women. (because monthly loss of blood) Babesia is a red blood cell parasite, it busts red blood cells as it replicates. So if your a man and have low iron levels, your probably loosing blood somewhere..... perhaps a babesia clue.
I don't believe Scott was saying to disregard mepron and zithromax, but rather may need to add other stuff.
AND BTW if Scott was doctor, I would go to him. He knows more about TBIs and chronic illness then 99.9% of the docs out there.
VON
Posted by von (Member # 8333) on :
PS: W0tm, I am glad you are not pregnant!!
Posted by Angelica (Member # 15601) on :
I agree that Scott is not only better informed then some doctors but also kind, helpful and very generous with his time. If he was a doctor I would go to him too. I always like hearing what he has to say on any subject. I like to read his posts and find them informative and educational. Scott is a gem in the world of Lyme.
Posted by w0tm (Member # 13104) on :
Thanks to all for very good info. I took the suggestion to mean ADD samento (and called other names besides samento) to what I was told to take.
Would someone like three quarts of all fat B&J ice cream (yuck -- if you don't care for pure fat as I don't)? I'll use peanut butter. But, before adding anything, I will contact my LLMD and discuss some of the excellent information all of you provided me (thanks again!). Yes, I shuld have added WA-1 just means state of Washington (where that strain was first discovered).
Whether there is a difference in treatment among variaqtions I would doubt it. My severe night sweats ended a year ago and my other Lyme symptoms have been steadily decreasing EXCEPT for all over body pain (especially upper shoulders) but this has turned around and gotten much better with the addition of many medications recently of which I don't know what many of them are supposed to do plus two shots of biaxin each week and three 1 ml of B12 shots I am given each week (I "feel" it it is the biaxin shots that is reducing the upper shoulders pain that once was extreme all over body pain).
Posted by Angelica (Member # 15601) on :
For the many lymies who have herpes or suspect they might skip the peanut butter and eat cheese or avocado with Mepron or Malarone as your 22 grams of fat.
Posted by laurie sm (Member # 14584) on :
I too was diagnosed with Babesia W1 and live in NY. I travelled on the west coast in 1999 and 2003. It was only diagnosed last month.
I have no sweats,just chills and get cold easily.
I have had brutal headaches for years and brutal nerve pain/haze for almost a year.
I am in the process of switching to malarone and minocycline. I begged my doc. to take me off zith
Posted by laurie sm (Member # 14584) on :
last post continued-something is not working right.
Another LLMD diagnosed me with Bartonella thru Fry but haven't really been treated for that.
I have still not turned the corner in my treatment.
How long do you guys think I should continue with Malorone/min. before trying IV???
My life seems like one continuous herx. I really don't notice any pattern.
No one dr.seems to have the answers. It is just trial and error as I seem to be getting worse and "herxing" like crazy...
laurie
Posted by sixgoofykids (Member # 11141) on :
Samento is good .... but you need Artemisia for babs.
Posted by daise (Member # 13622) on :
Hi wOtm,
You're sure you don't have a bun in the oven?!
I tested negative for babs but am being treated for it. I take a total of 10 mL of Mepron a day--like you (1 tsp. twice a day.)
I asked my LLMD if I should take 2 fish oil gelcaps and peanut butter with my Mepron and he surprised me and said--fatty meat! Yuch!
I didn't expect that from him at all! But OK. He's very good and very diet conscious.
For 28 years I've been sticking quite well to chicken, turkey and fish. (But not this last year!)
I eat 1/2 a cold beef hot dog (I have no way to cook anything; no bun!) plus take my 2 fish oil gelcaps, with Mepron.
We're adding arteminisin soon. I'm not taking zithro. I'm taking cipro and pulsed biaxin, and flagyl on weekends.
Like you, I have (right side) shoulder pain, plus also neck pain connected to head pain in the back of my head, behind my ear.
A very good physical therapist helped me with range of motion exercises plus ultrasound, huge heating pads, neck traction, and craniosacral therapy.
I had a very good myofascial trigger point therapist who helped me and a very good atlas orthogonal chiropractor who helped me.
Of course, heavy antibiotics treatment for Lyme has been major for shoulder-neck-head pain and we started to treat for bart and then switched to babs treatment about a month ago.
You mentioned biaxin shots twice a week for your shoulder pain. I've never heard of that! Are these intramuscular shots into the shoulder muscle?
I'd like to bring it up with my very good LLMD. (I am so very grateful to have put together a great team who've helped me!)
Hi Laurie sm,
You're miserable. Hang-in there! Just stay with it. I know it's hard. Any NEW signs or symptoms--tell your LLMD.
daise Posted by scared08 (Member # 14695) on :
I know it's me as I'm pretty sick today! Can anyone break down the symptoms of Babesia WA-1?
I was infected in California 18 yrs. ago, and I highly suspect that I have the WA-1 strain.
I tested positive for babesia, but I'm much worse after treatment!!
I have not been tested for the WA-1 strain.
I have horrible sweats, headaches, muscle spasms, brain fog and NOW THE MOST HORRIBLE PAIN IN MY SKIN, EVERY BONE, EVERY JOINT AND MUSCLE! IT HURTS SO BAD TO COMB MY HAIR, PUT LOTION ON OR EVEN LAY IN BED?????!!!!
ALSO, I HAD A NEGATIVE BRAIN MRI IN DEC. 07. 3 MONTHES LATER, I HAD ANOTHER BRAIN MRI WHICH SHOWS WHITE MATTER SCATTERED THROUGH OUT THE ENTIRE BRAIN!
I WAS TOLD THAT IT'S "PROBABLY DUE TO AGEING!" I'M 44 YEARS OLD, AND WOULD THE MRI CHANGE THAT FAST????!!!!!
I appreciate any help!!
Thank you
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by scared08: I have horrible sweats, headaches, muscle spasms, brain fog and NOW THE MOST HORRIBLE PAIN IN MY SKIN, EVERY BONE, EVERY JOINT AND MUSCLE!
Sounds like babesia, allright! It doesn't matter which strain you have, just continue treatment until it's gone!
Sometimes treating one coinfection [or Lyme] brings out another to the forefront.
Any chance you also have bartonella in the mix??
As for the MRI, I don't have any answers. I hope that continued treatment will make those lesions go away!
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by scared08: I know it's me as I'm pretty sick today! Can anyone break down the symptoms of Babesia WA-1?
They are pretty much indistinguishable from symptoms of babesia microti, or any other type of babesia...i.e., sweating, palpitations, fatigue, very bad headaches, etc.
quote:I was infected in California 18 yrs. ago, and I highly suspect that I have the WA-1 strain.
I tested positive for babesia, but I'm much worse after treatment!!
That makes me think perhaps you didn't treat long enough, or you are still treating? Because babesia treatment is notorious (like lyme treatment) for making you feel HORRIBLE while you're going through it. Like, I thought my head would BLOW UP. Somehow, it didn't.
It gets better. I swear. But you have to keep going.
quote:I have not been tested for the WA-1 strain.
Prolly doesn't matter; you said you tested positive for SOME strain; that's good enough!
quote:I have horrible sweats, headaches, muscle spasms, brain fog and NOW THE MOST HORRIBLE PAIN IN MY SKIN, EVERY BONE, EVERY JOINT AND MUSCLE! IT HURTS SO BAD TO COMB MY HAIR, PUT LOTION ON OR EVEN LAY IN BED?????!!!!
Ow. Feeling for you! It gets hard to distinguish babesia from lyme after a while.
quote:ALSO, I HAD A NEGATIVE BRAIN MRI IN DEC. 07. 3 MONTHES LATER, I HAD ANOTHER BRAIN MRI WHICH SHOWS WHITE MATTER SCATTERED THROUGH OUT THE ENTIRE BRAIN!
I WAS TOLD THAT IT'S "PROBABLY DUE TO AGEING!" I'M 44 YEARS OLD, AND WOULD THE MRI CHANGE THAT FAST????!!!!!
I appreciate any help!!
Thank you
First, I would not buy the 'aging' thing at 44. It's possible the first MRI just wasn't read very well. Or, alternatively, it's possible the damage wasn't present on the first one. No matter; it is usually reversible with treatment. That means GOOD treatment. Some LLMD's would consider IV for a case like that. You might consider it. It sure couldn't hurt. Not to say you couldn't get better without it. But if you had insurance coverage, it would be a good thing.
Good luck. I hope you have an LLMD helping you through this!!
Michelle
Posted by lymebytes (Member # 11830) on :
I can answer your CD57 question, as I see the LLMD who the test is named after and we just discussed this one week ago.
I first thought this test was an "immune system" test..no, I was wrong. Then I thought it had do with how badly I was Lyme infected...wrong again. I finally got the answer just a week ago from him. He says the CD57 is not just related to Lyme "load" but natural killer cells can be suppressed by many things, co-infections to viral issues.
Mine hit 150 after a wicked 7 weeks on high doses of Bicillin, I NEVER felt worse! It crashed as soon as I stopped Bicillin. Now back down to 40 - I feel much better and am back doing Bicillin at a a lower dose.
I use to rely on this test so much, because I was brainwashed to do so. But many LLMD's now do not pay much attention to it. I know by experience having a high CD57 doesn't mean health, it just meant my natural killer cells were up (for awhile). I now ignore the test and base my progress on how I feel. And I feel best when it lingers between 40-60...go figure.
On the other hand, my son and husband (both w/Ld and co-infections) have high CD57's above 150 and are both chronic and sick.
In my own opinion, I don't think this test is "panning out" like they hoped it would or proving much of anything. I use to think so..not anymore.
Take care.
Posted by Aligondo Bruce (Member # 6219) on :
Babesia duncani is probably more dangerous than microti. Why? It is closely related to babesia gibsoni, a very dangerous and difficult to treat type of babesia found in dogs and which is widely known to sometimes cause a chronic course of illness which can affect virtually any organ system in the body including capillary vasculitis and cerebral vasculitis of the type seen by fallon on the spect scans of lyme brains. Anemia is not always seen in the canine cases.
Virtually nothing has been published on this species, duncani, but I suspect that it is a major cause of 'chronic lyme' syndromes and a probable source of great concern among the CDC, IDSA, and the US defense department. The impression has been spread by the CDC and others that it is only found on the west coast, but veterinary and wildlife researchers have noted its presence in parts of the midwest and south.
If it is in rabbits, it is in people too.
All 'chronic lyme' patients should be tested for this organism. This means IFA, FISH, repeat giemsa smears, and PCR. PCR and giemsa in particular sometimes have to be repeated several times in order to get a positive due to typically low levels of parasitemia.
However, the degree of parasitemia bears no relation to the degree of symptomatic disease; this is generally true for all babesias.
Posted by daise (Member # 13622) on :
Hi everyone,
The CD 57 count is used as a SCREENER for diagnosis when you've had signs and symptoms for, at the least, a year or more.
When it's used to check a patients progress with Lyme treatment, that's when some say it doesn't make sense, by their history.
But then for others, it can.
6 weeks or longer before the test, you can't have antibiotics or anything that directly affects your immune system, like cordyceps or reishi, and so forth.
I'm grateful for the very positive CD 57 test (44) (blood sample sent to LabCorp Lab in Dallas TX) because that is the only reason I'm getting Lyme and co's treated by my insurance company.
Insurance companies love blood tests! And that's why they accepted my diagnosis.
You see, I tested negative by IgeneX western blot 3 times for Lyme (also negative by western blot a year and several months later. Negative for the co's, too.)
The CD 57 count is a measure of how far worn down your immune system is and it's specific to Lyme.
daise Posted by CD57 (Member # 11749) on :
I've been told by my LLMD (related to Igenex founder) that 1) the strains of babesia cross-react on tests and 2) that duncani must be treated for a minimum of 10 months....and must include artemesinin.
I have no "classic" babesia symptoms at all but my 3 yr old recently tested positive for microti. He for sure got it from me.
Posted by scared08 (Member # 14695) on :
Hello,
Thank you so much for all of the much needed advice!!!
I only had 40 days of treatment for babesia! And have been very sick every since.
Which lab should I use for more testing??
Also, I need a new LLMD. Do ya'll know of one that is good, and has knowlegde about the WA-1 babesia.
I also think I should start IV antibiotics as the oral ones don't seem to be as affective. I have a severe problem with aborbing anything, digesting food, etc...
Also I wonder? I have severe iron deffecial anemia. I have IV iron all the time just too keep it at a functional level. If I miss it, my ferriton will drop to 6 in a matter of two monthes.
This has been driving my Hemotologist crazy, because he cannot find the cause. He knows that I am + for Lyme, babesia, etc., but he does not feel this has anything to do with it. Partial because I have iron deffeciant anemia, and babesia causes a differant type of anemia?????
What do y'll think???
Thanks again!!!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by lymebytes: I can answer your CD57 question, as I see the LLMD who the test is named after and we just discussed this one week ago.
I first thought this test was an "immune system" test..no, I was wrong. Then I thought it had do with how badly I was Lyme infected...wrong again. I finally got the answer just a week ago from him. He says the CD57 is not just related to Lyme "load" but natural killer cells can be suppressed by many things, co-infections to viral issues.
Mine hit 150 after a wicked 7 weeks on high doses of Bicillin, I NEVER felt worse! It crashed as soon as I stopped Bicillin. Now back down to 40 - I feel much better and am back doing Bicillin at a a lower dose.
I use to rely on this test so much, because I was brainwashed to do so. But many LLMD's now do not pay much attention to it. I know by experience having a high CD57 doesn't mean health, it just meant my natural killer cells were up (for awhile). I now ignore the test and base my progress on how I feel. And I feel best when it lingers between 40-60...go figure.
On the other hand, my son and husband (both w/Ld and co-infections) have high CD57's above 150 and are both chronic and sick.
In my own opinion, I don't think this test is "panning out" like they hoped it would or proving much of anything. I use to think so..not anymore.
Thank you for posting that!!! I've said it all along that this test is basically not all it's cracked up to be.
The reason I say that is from reading all the people here whose scores are all over the place.
Doesn't make sense!
MAYBE a low score WITH a positive or semi-positive test means something, but other than that, it ain't much!
I wish you'd add your info to some of the threads on the CD-57.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by scared08:
I only had 40 days of treatment for babesia! And have been very sick every since.
Which lab should I use for more testing??
Also, I need a new LLMD. Do ya'll know of one that is good, and has knowlegde about the WA-1 babesia.
Are you seeing an LLMD in GA or where???
40 days is not enough, as you can tell!! All you need is an LLMD who knows how to treat babesia.
I can help, but you'll probably need to travel.
PS... I don't think you need more testing... just more treating. But if you want to, I would recommend Fry labs for coinfection testing.
Posted by w0tm (Member # 13104) on :
"SixGoofyKids"
First of all my apologies for the delay in responding. I just now read your post to me. Sorry!
I asked him again about the 80 out of 100. He is a very careful and cautious doctor. He is primarily involved with AIDS as a researcher and doctor. He is considered one of the best in the country.
He has a waiting list of over a year to become a patient. Yes, 80 out of 100 tested positive for Babesia WA-1 (his patients who he was already treating or had treated for Lyme). So I only repeat what he told me. Dr. B. in Kansas City.
The two shots of biaxin a week is from another LLMD. Dr. R. in KC. I heard good things about her many successes so thought I would try her. Glad I did! Dr. B. had done all he could for me (keep in mind he is mostly an AIDS doctor -- he says he has more AIDS patients than any other doctor in the Midwest.
The new doctor (Dr. R.) does many more tests and looks EVERYWHERE. Taking nothing for granted. Her testing confirmed Lyme which I knew plus found other co-infections. For some reason she did not test for Babesia. Until recently it was "accepted knowledge" Babesia did not exist in the Midwest.
That came from a follow-up visit with Dr. B. that I expected would just be "feeling any better?" "no" "OK, see you in six months". BUT he instead told me of Babesia WA-1 saying it was brand new to him and that's when the 80 out of 100 came out. He said he had picked up "Babesia WA-1 WAS in the Midwest at a seminar a month or two ago. Very recent. So recent he had no results back from the 80 he was treating. He said with my history of severe Lyme that he knew I would test positive. I did. I am now taking the two meds already listed. I am looking into the third. I can't say I feel any better. But I've only been taking them for ten days.
The shoulder pain is the most noticeable remaining Lyme symptom. I have two identical "hot spots" on the inside of both extreme upper arms that, when pushed, are very painful. Lymph nodes? No one is sure. That and my hips hurt. Heat REALLY seems to help - like a heating pad. The first hour of each day is pure Hell for me but then the all over body pain gradualy goes away along with other symptoms until, by noon, only the upper arms pain remains.
The biaxin shots have nothing to do with my shoulder pains. One in each buttock once a week. I also self-inject 1 mg of B12 three times a week. And take about 40 pills plus several liquids twice a day. Most make up for deficiencies the other doctor found in me.
Like I was very low in vitamin D. So I take vitamin D pills. Lyme pulls many minerals ou of the body. All those things you see listed on the back of a One-A-Day vitamin bottle. You have to get them all back in your body and just a One-A-Day vitamin pill will not do it!
I think the biaxin shots is the "heavy artillary" in currently suppressing my Lyme. B12 builds up my immune system. And all the other pills (i.e. Omega 3 fish oil) are supposed to make up for what Lyme pulled from my body (I guess). I have more energy every day and feel better every day (with periodic relapses).
I think I'm now receiving standard accepted late stage Lyme treatment (nine weeks of IV Ceftin broke the back of Lyme and now I'm working to regain my health). As we all know, Lyme is never cured - only suppressed. And I'm now fighting the co-infection Babesia WA-1. I now test negative for Bartonella. I am 10% of where I was ten years ago when I ran ten miles a day and was in great shape.
But I am 50 times beter than I was a year ago when all the symptoms were at their peak. From night sweats to no energy. It was a struggle to get up in the morning and make it to a chair to watch TV all day.
With the aid of these two fine doctors I now have a life again. I am going to a KC Royals game tonight with my family (including first grandchild!). A year ago I was "arranging my affairs" and looking into the best ways of painless suicide.
I am now stuck somewhere between perfect health and "death is near". But I do have days I enjoy life. My biggest problem today is myself. I spent three years as low as anyone can go.
I got used to being a vegetable, unable to sleep at night, in terrible pain all day and no energy or stamina. Very strong pain killers were not enough other than to leave me in a stupor. Surely I'd die soon but I did not.
I think my health is permanently damaged but I could do myself much good with some exercise and losing weight (Google Wilson's Syndrome for info on why Lyme can cause metabolism to stop and the body to become highly toxic and why weight gain on low calories happens - I have that under control too following Dr. Wilson's instructions). I am no longer toxic! Food tastes good! My body is SLOWLY returning to normal.
If we're both still around in five years check back and I'll tell you if this SLOW recovery has me back to full health. At age 61 I'm feeling the pains of old age. But I am soooo much better than a year ago! And for all those who harass LLMD doctors all for the bottom line of insurance companies I hope there is a special place reserved for them -- I won't go on.
If Lyme was attacked as the epidemic it has become as a human issue instead of a political and money one it could be conquered. And quickly. In the meantime for every (kind of) success story like mine there are a hundred people blown off by doctors telling them "it's imaginary" or "you have fibromyalgia - there is no treatment or cure" or given a false negative diagnosis and just told to "go away". I feel so sorry for them. We all have friends and relatives who are invalids and live in constant pain. They see some doctor each month that does nothing. What if 99% had Lyme and/or a co-infection? I bet they do! But they long ago settled into the life of an invalid in constant pain hoping for a death that doesn't come.
It is so unfair! May the truth come out soon and Lyme be accepted the way AIDS changed from "rare and mostly false" to a world-wide epidemic with no one seriously saying it was not a serious virus.. May Lyme reach the same "tipping point" - and soon!
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