At a friend's suggestion, I made an appointment with a LLMD in early 2005.
Since May 2005, I have had the following tests done:
Igenex IgM and IgG tests Stony Brook IgM and IgG tests Igenex Spinal Tap test Babesia Fish MDL Spinal Tap test Imogen Spinal Tap test Brain MRI Spinal MRI Cerebral Spec Scan CD - 57 Test 55 tubes of blood for various other tests - including HIV and Syphilis - both NEGATIVE!
As a result of all this testing, in addition to keeping all these labs in business, I tested "Negative" for a Stony Brook Lyme Immunoblot in connection with the Spinal Tap, although non-specific banks identified were IgM (bands 18,28,37,and 90) and for IgG (60).
Tested positive for an Igenex Babesia Fish test.
Tested postive for an Igenex Lyme test: IgM bands: 23,25,28,41,and 93; bands 18,30,31,39,45, and 66 were indecisive. For IGG, band 58 was positive with bands 30,31,39,41, and 45 being indecisive.
Had a CD - 57 test score of 24
No meaningful change in my brain or spine MRIs over the last 8 years.
Cerebral spec scan was 'cloudy'.
Went on Minocycline for 10 days and had an allergic reaction to it.
What should I do next?
All responses are appreciated!
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi JustMe. Nice to hear from you again!
Sounds to me like you have Lyme disease + Babesia.
I would get thee to an LLMD and commence treatment.
You've done most of the legwork already for him/her with all these good diagnostic tests.
Many on here, as you know, were originally diagnosed with MS, who really had Lyme instead (including me).
Treatment might be a long haul but well worth it to be getting better (Lyme treatment) instead of just treating symptoms (as in MS treatment).
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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janet thomas
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Member # 7122
posted
An allergic reaction? Or a herx??
Could you give us some details?
The following bands are specific 18,23,30-31, 34,37,39,83 and 93.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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janet thomas
Frequent Contributor (1K+ posts)
Member # 7122
posted
My Lyme brain forgot something-Babesia treatment is different than Lyme.
-------------------- I am not a doctor and this is not medical advice but only my personal experience and opinion. Posts: 2001 | From NJ | Registered: Mar 2005
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posted
10 days into taking Minocycline - 100 mg pill - 2x a day, I started itching like crazy. First with my hands and it spread to the rest of my body. Imagine being on a plane from NYC to LAX with this occuring and you have me.
Two LLMDs told me to stop the medication.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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posted
Yes..and I will be taking medication for both in addition to the Avonex for MS.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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The problem with longstanding lyme is that antibody production is suppressed frequently. This is one of the reasons why we have trouble relying solely on testing. You need to remember that lyme is a clinical diagnosis. All the testing was done in hopes of having a result that would convince the insurance co. and protect the doc because of the political nature of the disease. Oh, and maybe it will help diagnose! But if you have a positive babesia test, then you know you have been tickbitten for sure. That means you had a good chance of getting lyme also because many ticks carry more than one kind of germ. The + babesia and positive band(s) for lyme are a pretty good indication, even if not CDC positive. Did you read the explanation of testing in the newby links at top of this page?
Your reaction to minocin may have been allergy or it may have been herxheimer. People in your situation, especially with less knowledgeable docs, end up being taken off antibiotics for just this reason. The reaction to treatment is confused with allergy. (Note: I am editing this because your explanation of the rash was not posted when I wrote this, for some reason. Before, I was fairly certain you could be having a herx. Now I am less certain.)
Now, some people ARE allergic to penicillins, so maybe you can switch to a drug in another family, or treat the babesia first, while going to an allergist (a good one) and find out if you really are allergic. Might also get tested with cephalosporins since they are related to the penicillin group. You are probably not anxious for anymore testing, but this info will help in designing your treatment. It will add ammunition. And you don't have to wait for these results before starting to treat the babesia.
[ 28. September 2005, 06:54 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
quote:Originally posted by JustMeInCT: I was dxed for MS in 1997.
At a friend's suggestion, I made an appointment with a LLMD in early 2005.
Since May 2005, I have had the following tests done:
Igenex IgM and IgG tests Stony Brook IgM and IgG tests Igenex Spinal Tap test Babesia Fish MDL Spinal Tap test Imogen Spinal Tap test Brain MRI Spinal MRI Cerebral Spec Scan CD - 57 Test 55 tubes of blood for various other tests - including HIV and Syphilis - both NEGATIVE!
As a result of all this testing, in addition to keeping all these labs in business, I tested "Negative" for a Stony Brook Lyme Immunoblot in connection with the Spinal Tap, although non-specific banks identified were IgM (bands 18,28,37,and 90) and for IgG (60).
Tested positive for an Igenex Babesia Fish test.
Tested postive for an Igenex Lyme test: IgM bands: 23,25,28,41,and 93; bands 18,30,31,39,45, and 66 were indecisive. For IGG, band 58 was positive with bands 30,31,39,41, and 45 being indecisive.
Had a CD - 57 test score of 24
No meaningful change in my brain or spine MRIs over the last 8 years.
Cerebral spec scan was 'cloudy'.
Went on Minocycline for 10 days and had an allergic reaction to it.
What should I do next?
All responses are appreciated!
Western blots look for antibodies. These antibodies are made by your immune system. In this case, the antibodies are made to fight against different parts of the Lyme bacteria, which is called
Borrelia burgdorferi, and other Borrelia species. In other words, your immune system does not make one big antibody against the whole bacteria. So, when you see a number on a borreliosis Western blot, it corresponds to a specific part of the bacteria. Numbers on Western blots correspond to weights. Kilodaltons (kDa) are the units used for these microscopic weights. Think of it like pounds or ounces. An 18 kDa antibody weighs 18 kilodaltons.
To do a Western blot, thin gel strips are impregnated with the various parts of Borrelia burgdorferi. Each of the
numbers, 18 through 93, on the test result form, is a part of the bacteria. Blood is made up of red blood cells and serum; Spinning blood in a centrifuge separates serum from red blood cells and other things, like white blood cells and platelets.
Serum contains antibodies made by the immune system. Electricity is used to push the serum through the thin gel strips for the Western blot. If there are any antibodies against parts of Borrelia burgdorferi present
in your serum, and these parts are impregnated on the strip, the antibody will complex (bind) to that part. When antibodies form a complex, it is called an antigen-antibody complex. Anything foreign in the body
is an antigen, such as a ragweed pollen particle, germ, cancer, and even a splinter. In the case of borreliosis, the various parts of Borrelia burgdorferi are all antigens. Though each antigen is
different, they all come from the same bacteria. So all the numbers that are positive on the test report are due to antigen-antibody complexes.
If enough of the complexes are formed, eventually it may be seen with the naked eye as a dark band. -
Band intensity reflects how dark or wide it is. Controversy exists about band intensity. Many would say
the " +/-" equivocal bands are not significant. The problem I have with that, is that there are "-" negative bands.
The lab has no trouble calling some bands negative. So they must be seeing something when they put "+/-" at some bands.
The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the "+/-" equivocal is reported on the borrelia associated bands, it is usually significant. Instead of ignoring these, they should be a red flag to keep pursuing a laboratory diagnosis. Giving patients 4 weeks of antibiotics will convert a negative or equivocal Western blot to positive in about 36% of cases.
As mentioned, if these positive blots are found by specialty labs, over 99% of those patients will respond to antibiotics.
Now As a result of all this testing, in addition to keeping all these labs in business, I tested "Negative" for a Stony Brook Lyme Immunoblot in connection with the Spinal Tap, although non-specific banks identified were IgM (bands 18,28,37,and 90) and for IgG (60).
Tested postive for an Igenex Lyme test: IgM bands: 23,25,28,41,and 93; bands 18,30,31,39,45, and 66 were indecisive. For IGG, band 58 was positive with bands 30,31,39,41, and 45 being indecisive.
IgM bands: Pos 23,25,28,41, 23 kDa OspC 25-kDa OspC [specific for Bb] *28-kDa OspD, Oms28 [specific for Bb] *41-kDa FlaB *93-kDa an immunodominant protoplasmic cylinder antigen, associated with the flagellum [specific for Bb]
Bands found, or tested for, in IgG analysis in USA or Mexico. 18-kDa 20-kDa 21-kDa 22-kDa 23-kDa 24-kDa 28-kDa 29-kDa 30-kDa 31-kDa 34-kDa 35-kDa 39-kDa 41-kDa 45-kDa 55-kDa 58-kDa 88-kDa 62-kDa 66-kDa 93-kDa Bands found, or tested for, in IgM analysis in USA or Mexico. 18-kDa 21-kDa 23-kDa 24-kDa 25-kDa 28-kDa 37-kDa 39-kDa 41-kDa 45-kDa 55-kDa 58-kDa 60-kDa 66-kDa 93-kDa
You have lyme.
Heres some links for Western blot info. On Page two of Newbie links located in medical at top. Western Blot Info
Hi and WELCOME! Get a LLMD or at least Dr that is willing to learn about lyme. "Lyme literacy" means, first and foremost, knowing how to diagnose the disease accurately. Borrelia Burgdorferi is a clinical diagnosis, based on symptoms and on your response to treatment. Good Luck, bumpy road ahead. Lyme Disease symptoms 2005 Lyme Symptoms 2005 Post for a LLMD in Seeking a Doctor. Ps remember I am not a Dr, just a fellow sufferer. Support Links LLMD's CDC"This surveillance case definition was developed for national reporting of Lyme disease; it is not intended to be used in clinical diagnosis." From the CDC case definition: From: Cheryl
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Do you have a rash? I had itching and stinging terribly, but it's now only at one or two spots at times. I know mine aren't from the antibiotics because I've been on these and others before.
It's enough to drive you crazy! when it was happening between the buzzing in my ears, and feeling like I was being bitten, I thought it was mosquitoes.
With my experience it has lessened quite a bit. Maybe lower arm, hand, but it used to be everywhere!
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
Hi just me,
Did the LLMDs suggest you stay on the Avonex? It is a immune suppressant a form of chemo therapy. The drug co. say it is a immune regulator but...wondering if being on that and starting abxs (any abxs) makes the body go haywire.
Just wondering...you know what your body is telling you and it is frightening going through this stuff.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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quote:Originally posted by JustMeInCT: Tested positive for an Igenex Babesia Fish test.
Tested postive for an Igenex Lyme test
Go with it! There are many different abx you can try. How about Biaxin XL or Zith?
I would seriously consider asking your dr to take you off the Avonex, for the reason dmc suggested. Actually, YOU are in charge and can make this call!
Welcome to our little club!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Thank you for all the replies. I am truly humbled by everyone's effort to give me good information.
Does anyone have an opinion about the Igenex Fish test? How accurate is it? Is it well-thought of?
In regard to stopping the Avonex; I have not crossed that bridge with my 2 LLMDs but a LL neuro said to stay on it. I am not sure what the best thing to do about it right now.
Should I hope for a full recovery or just be happy that I will not be deteriorating anymore?
Lots of questions; hoping for more good answers.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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posted
Hi, Just thought I would let you know that I was diagnosed with Progressive MS in 2001. I was on Avonex for 9 months from Nov 2003 thru August 2004 when my immune system crashed! The Avonex nurse told me to get off of it! My neuro was not too happy when I returned and told him my story.
This past year has been a nighmare as I have had infections which could not be cleared up as I had no immune system left to fight them. I was put on Cipro 3 times and had a very toxic reaction to that. Listen to your body!
Finally I posted for a LLMD here and last week found him. I tested positive for Ebstein-Barr virus, Lyme, both of which can cause MS. He uses a different method of testing and doesn't put too much faith in the other testing methods. He uses testing that is used in Europe. I am being treated by a doctor who uses herbals, homeopathics, vitamins & minerals.
He said my immune system needs to be built back up before we will consider any other treatments. This doctor practises alternative and regenerative medicine. BTW, I have been sick since 1980. Don't give up looking for the right treatment.
posted
Don't worry Gabrielle, I will never give up.
Many of my MS friends told me that I was 'chasing a rainbow' and that the Lyme stuff was BS.
I am anxious to start a treatment program and hopefully feel better.
There is so much that I want to do in life and, in some ways, I have taken a back seat for the last 8 years trying to maintain my health due to the MS.
If I can get better, I will truly believe that God gave me a second chance. And this time, I will not blow it.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Hi there, was wondering how you were doing. I think the babesia FISH test is accurate--that's what I had. THat tests for the RNA presence of the organism. Another lyme patient in my doc's office tested negative by FISH and I can say that although she has as her main symptom fibromyalgia and perhaps some fatigue, she is functional and working full time without any drugs.
However, I am not sure what treatment to proceed with in my case as anti malarial drugs are very strong. I have hesitated so far esp. since I have a book to finish. I did get my HMO doctor to agree to do a thick and thin blood smear *and* I got the wonderful head pathologist at the hospital to oversee this personally. Its hard to find chronic babs on those because it can be 1-2% of circulating blood cells and a greater precentage in the bone marrow but who's gonna check your bone marrow???
SHe did not find any babs on that blood smear and recommended to my doc to do it again and he said, come in on a day you feel really lousy, as there could be variations in parasite load. I haven't done hyperbaric since last Saturday and am thinking since I probably suppress it with that maybe I should go in today as I feel pretty lousy . Or maybe next week.
It makes sense you'd have both lyme & babesia as the area you're in is epidemic for both and that's how I got both (Connecticut).
Maybe you were allergic to minocin so why not try a different abx? If I were you I'd go to Dr. L, I told you I think he is the best, the other great one is Dr. H but Dr. L is much closer to you. The neuro LLMD is probably okay but he has not been treating this for nearly as long as Dr. L. Its quite likely the neuro LLMD is saying stay on avonex, and recommended minocycline, because he is protected in that decision, because as you recall and as he noted, mino downregulates MMP's and there are reasons aside from lyme to use it.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Babe - babesia likes oxygen, unlike lyme, so I don't think hyperbaric suppresses it, and would therefore not be a factor in testing (except as encouragement to the little devils, if they are in your bloodstream.)
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I saw Dr. L recently and he did the Fish test.
I had spinal tap fluid sent to three labs and they came back negative in each case. I am taking a multiprong approach to this as I learned with the MS diagnosis relying on a few doctors can sometimes be a mistake.
I am somewhat comforted that Stony Brook came back with some positive bands. This provides some support to Igenex' previous findings and is important to me given the current onslaught against Igenex.
Looking ahead, I think that I will consult with a few doctors, including my MS neurologist, as I think having more data, rather than less,has given me the information needed to make a good decision.
Believe or not, Dr. L's office hours work best for me as he is open at 6:30 am twice a week.
OxegenBabe..I also have to catch up with you on some other stuff..so I will send you a note shortly.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
lou, I'm sooooooooo weary of seeing that misnomer on here (babesia likes oxygen). In vivo, hyperbaric kills babesia, certainly at 2.4 ata as I've said many times, my old hyperbaric doc would test her blood before and after and see lots of dead babesia after an hbo session in the extracellular space. I think 1.3 (home chamber) does as well since I feel better when I use it.
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
Obabe:
What does a dead Babesia look like? And are there RBC fragments within the same sample?
Barb
-------------------- Barb Peck (Elder LymeNet user). Lyme since 1975 Transfusion Posts: 1882 | From VT | Registered: Oct 2002
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I don't know, I didn't look. WIsh I could ship her my blood. She is a brilliant harvard-stanford trained doc, ran an ER room with 150 employees, shifted to alt med in MA and her family has lyme now,.she trained herself in microscopy. She and daughter have babs. The family left MA needless to say, to get away from ticks.
Posts: 2276 | From united states | Registered: Jun 2004
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Please pardon my ignorance, but could someone explain to me the difference between lyme and Babesia?
Also, what medications should I be considering for my situation?
Thanks in advance for your help in this.
Posts: 122 | From Connecticut Shoreline | Registered: Apr 2005
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
JMIC, Keep "chasing those rainbows" you may be the one who gets the pot of gold on the other side!
Hope is only there is we keep trying to find a better life.. once we give up, all hope is gone..
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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