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Hello;

I'm new to this. I've been sick for many years--diagnosed with such things as Fibromyalgia, Hashimotos, Lichen Planus, Osteopenia/Osteoporosis, Carpal Tunnel, H-Pylori, Recurring Kidney Stones, High Cholesterol, Migraines, etc. etc.

I had never been tested for Lyme Disease before; but the Dr. reccommended I get tested for it recently. I had the Western Blot IGM, which was negative, and at the same time I had the Western Blot IGG, which was Positive. My Dr. had me go in for another blood test after these came back--he said it was some kind of confirmation test.

He is also referring me to a Dr. Ames in the Tri Cities, who specializes in Lyme Disease, and other infections.

So does this mean I do or don't have Lyme Disease??

Thank You;
Ava
[QUOTE=ticker;3135619]Hi Ava, welcome to the board!

How long have you been sick? Below is a Lyme symptom list. You can have any combination of symptoms.

Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol

When Lyme disease is a possibility, it is very important to see a knowledge-able doctor. Many doctors do not understand Lyme and treat with outdated protocols. Lyme needs continuous, aggressive treatment. No test is completely reliable, and results can vary by lab.

Do you have copies of your Western Blot? The IgM tests for a more recent infection, the IgG a longer standing one. Although the CDC requires several bands to show for it to be positive, many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are present. Some are specific for Lyme.

You already have a positive test and symptoms. You need to be treated.

Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. It may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA. Have you been tested for these?

I have not heard of the doctor you will be seeing.

It is also important to learn as much as possible. I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner.[/QUOTE]


Hi;

Thank you for your response. I have had a large percentage of those symptoms you listed off and on for many years. I was really healthy as a child, then I began having some female problems in my teens, and then started getting really sick after my first child was born over forty years ago. Three months after she was born I got Strep Throat so bad they wanted to hospitalize me. Three months later I was hospitalized with Pneumonia, and almost died..

I'm sick to some degree most all of the time; but it's like I really have to pace myself, or I get seriously ill. Any time I have tried to do a strenuious exercise and diet program I get very ill. A couple of times I got flu-like symptoms, ran a fever, and had very tender and inflamed nodules on my shin bones--this didn't go away for about a year. This last time I tried to exercise and diet, it threw me into almost a year of recurring kidney stone episodes that just finally stopped in March. Not fun.

I'm about 30 pounds heavier than I am comfortable with; but I can't do anything about it. If I look at carbs I gain weight, and if I try to exercise I get sick. All I can do is try to maintain without gaining more weight.

There was ample opportunity for tick infection, because we camped near streams in the woods for half the Summer every year when I was a child. Also, I have lived the past ten years on an acreage where there are deer that come up and eat on our lawn at night.

Since my early thirties, I have treated naturally as much as possible, and have avoided antibiotics unless absolutely necessary. I have done everything the doctors tell me, and it helps; but still I am sick.

My Dr. that I have been seeing for a number of years treats naturally as much as possible; but has had to give me antibiotics a number of times this past few years. Last winter I got a urinary tract/vaginal infection following a lodged kidney stone, and had to be on a couple of different antibiotics for a whole month.

A couple of months ago I was diagnosed with E-Histolytica, and I was put on antibiotics for it. I was on high dose Tinidazole for three days followed by Paramomycin/Humatin for 7 days. I'm not sure which one of them helped; but I felt better for about a week than I have in years. The sore throats, the pain in my muscles and joints etc. let up, and I could even tolerate dairy products!!!

Yes, I do have a copy of my tests. As I mentioned, the Western Blot IGM was Negative, and the Western Blot IGG was positive. My Dr. had me go in for another blood test a couple of days ago--he said it was for confirmation. From the little I've read on the internet, another test wasn't necessary, since the IGG was Positive--or did I misunderstand something?

My Dr. doesn't know very much about Lyme, and he hasn't had very good luck treating some of his other Lyme patients, so he is sending me to the specialist in the Tri-Cities (Dr. Ames in kennewick, Wash.)

I also have contacted a medical center in Reno, Nv. to get some information from them. It's called "Sierra Integrative Medicine". Are they good? How will I know who to go to for this? Is there a current protocol that is working the best for the most people?

I ordered a book called: "The Top 10 Lyme Disease Treatments" By Bryan Rosner.. Is this a good book, or would you still reccommend the one you mentioned?

As if my head wasn't foggy enough before, it's really spinning now.

Thank you for your time--and patience.

Blessings;
Ava
[QUOTE=ticker;3135849]Hi Ava. I highly recommend Karen Vanderhoof-Forschner's book. I have not read the other book, so I am not famiilar with it.

Some women who have Lyme feel worse after childbirth. Lyme disease can be passed through pregnancy and breastfeeding. Your children should also be evaluated by a knowledgeable doctor.

You really need to be tested for the co-infections also. A large percentage of people who have Lyme are co-infected. It may affect treatment choice and progress. As someone who has had several, I know firsthand how important it is to know if they are present.

The Lyme bacteria can change forms. One form it changes into is the cyst form. Tinidazole is used to treat the cyst form of Lyme. This may be why you responded to it. You can read about the cyst form in Dr. Burrascano's Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses.

I have not heard good things about the Reno clinic regarding Lyme. There are some excellent Lyme doctors in CA. If you would like their names, let me know.

I hope you can get treated soon. Hang in there okay?[/QUOTE]

Hi Ticker;

I found the one book " Karen Vanderhoof-Forschner's book" at Amazon; But I couldn't find the other one.

The Dr. in the Tri-Cities supposedly tests for other infections also--I don't know if that means "co-infections" though.

A question, if I may---If you had a Western Blot IGM that was negative, and a Western Blot IGG that was positive, would you consider yourself as having Lyme Disease? Both tests were through Igenex. I guess I'm just not sure what to think since one of them was negative, and the other was positive.

If your answer to my above question is yes, then I would like the names and locations for the Lyme Doctors in California.

Thank You;
Ava
[QUOTE=ticker;3136300]Hi Ava. Dr. Burrascano's guidelines is not a book, it is on-line.

[COLOR="Red"][COLOR="Blue"]Thank You---I will look them up.[/COLOR][/COLOR]

Many people who have Lyme do not test positive by the CDC standards. The CDC requires several bands to show for the test to be considered positive; however, many people who have Lyme do not have this many bands. What is important is which bands are present. Some are specific for Lyme.

[COLOR="blue"]I don't know much about "bands". Here is what my test says--
IGENEX-IGG-RESULT POSITIVE
CDC/NYS-RESULT POSITIVE
18 kDa +
22kDa -
**23-25 kDa IND
28 kDa -
30 kDa +
**31 kDa +
**31 kDa +
**34 kDa +
**39 kDa +
**41 kDa ++++
45 kDa +
58 kDa +
66 kDa +
73 kDa -
**83-93 kDa IND

Can you tell me if all of that means something??? I have a copy of my Western Blot IGM also--which was negative---would it help if I post those results too?

Part of the reason I'm so confused is because first my Dr. ordered the two tests, and told me that I have Lyme Disease. They gave me a prescription for 2,000 mg. of Tinidazole daily (refillable for a year), and told me not to start it until they got back to me with the brands etc. of some natural remedies (Teasel, Coloidal Silver, and Cat's Claw) that they wanted me to take along with it.

Then they turned around and told me not to start the meds and remedies, because they wanted to send me to this specialist in the Tri-Cities. Then I got a message from the Dr. office to stop by and pick up a kit to do another Lyme test. When I questioned it they said it was to "confirm" the diagnosis. They said if it comes back negative, then I don't have Lyme Disease. [/COLOR]

You have a positive test. You need to be treated. Why would a doctor want to re-test you? To see if it is negative? Then say you don't have it? It is crazy!

[COLOR="blue"]You hit the nail on the head!! Since I'm a total novice on this, I thought maybe it was some other kind of test that follows the first ones?? Thank you (SO) much for your candidness.[/COLOR]

The Lyme doctors I know of in CA who come highly recommended are Dr. Raphael Stricker in San Francisco and Dr. Steven Harris who has offices in Nevada City, Palo Alto, Long Beach, and Malibu.

[COLOR="blue"]Thank you. I will call and get some information from them. I'm not sure how we will work this out; but my husband said he is on board with whatever we have to do. The problem is that he reacts very badly to pollution, and there is likely a (LOT) of that in California.

I hope you don't mind all the questions--I'm just sooooo confused. I know I said it before; but THANK YOU!!!

Blessings;
Ava[/COLOR] [/QUOTE]
Hi Ava. I do not mind questions at all. It is very important to learn as much as possible. Knowledge is power.

It is unreal how much resistance there seems to be about tick-borne illnesses with the majority of the medical community. So often when people test negative (with the lousy ELISA test) they are told they definitely do not have it. When they test positive, they are told it is a false positive or the doctor keeps testing trying to get a negative result! Why do they even test then? It is crazy!

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Like I stated before, the IgM tests for a more recent infection and the IgG a longer standing one.

Band 41 is often the first to show and yours is positive. Bands 23-25 is a Lyme specific band and yours is IND. Technically I believe this means not positive and not negative. To me if it is not negative, it is positive. Bands
31, 34, and 39 are Lyme specific bands and yours are positive. You are even CDC positive. Many people who have Lyme are not.

You definitely need to be tested for the co-infections and treated. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case. Some people who have band 45 positive have Ehrlichiosis. I did.

There really are not many Lyme doctors in the country. Many people, including myself, have to travel out of state to see one. Some doctors will spread out appointments and/or do phone consultations in-between for patients who have to travel.

I hope you can see a knowledgeable doctor soon and get the help you need. Keep us posted on your progress okay?
[QUOTE=ticker;3136399]Hi Ava. I do not mind questions at all. It is very important to learn as much as possible. Knowledge is power.

It is unreal how much resistance there seems to be about tick-borne illnesses with the majority of the medical community. So often when people test negative (with the lousy ELISA test) they are told they definitely do not have it. When they test positive, they are told it is a false positive or the doctor keeps testing trying to get a negative result! Why do they even test then? It is crazy!

Below is the breakdown of the Western Blot bands:

9 cross-reactive for Borrellia
12 specific for Bb
18 unknown
20 cross-reactive for Borrellia
21 unknown
22 specific for Bb, probably really the 23/25 band
23-25 outer surface protein C (OspC), specific for Bb
28 unknown
30 unknown; probably an outer surface protein; common in European and
one California strain
31 outer surface protein A (OspA), specific for Bb
34 outer surface protein B (OspB); specific for Bb
35 specific for Bb
37 specific for Bb
38 cross-reactive for Bb
39 is a major protein of Bb flagellin; specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection and is specific for all Borrellia
45 cross-reactive for all Borellia (sometimes people with Lyme who have
this band positive also have the co-infection Ehrlichiosis)
50 cross-reactive for all Borrellia
55 cross-reactive for all Borrellia
57 cross-reactive for all Borrellia
58 unknown but may be a heat-shock Bb protein
60 cross reactive for all Borrellia
66 cross-reactive for all Borrelia, common in all bacteria
83 specific antigen for the Lyme bacterium, probably a cytoplasmic membrane
93 unknown, probably the same protein in band 83, just migrates differently in some patients

Like I stated before, the IgM tests for a more recent infection and the IgG a longer standing one.

Band 41 is often the first to show and yours is positive. Bands 23-25 is a Lyme specific band and yours is IND. Technically I believe this means not positive and not negative. To me if it is not negative, it is positive. Bands
31, 34, and 39 are Lyme specific bands and yours are positive. You are even CDC positive. Many people who have Lyme are not.

You definitely need to be tested for the co-infections and treated. Many Lyme doctors believe the co-infections need to be treated first for Lyme treatment to be effective. This has been true in my case. Some people who have band 45 positive have Ehrlichiosis. I did.

There really are not many Lyme doctors in the country. Many people, including myself, have to travel out of state to see one. Some doctors will spread out appointments and/or do phone consultations in-between for patients who have to travel.

I hope you can see a knowledgeable doctor soon and get the help you need. Keep us posted on your progress okay?[/QUOTE]

Hi Ticker;

That helps a lot. I wasn't sure if that's how everyone's test looked or what. Now all I need to do is go study to see what all of those foreign words like Ehrlichiosis and Burrascano mean. (*;*)

I found the site you mentioned with the information by Dr. Burrascano. I am also going to order the book you reccommended.

I already had an appointment with the Dr. in the Tri Cities before I came into this forum. The earliest I could get in to see him is the 13th of this month. Is there a quick guideline one can use to determine if the Dr. we see is (truly) proficient in treating Lyme? His name is Dr. Geoffrey Ames, and his office is in Richland, Washington. Has anyone here heard of him?

If I might just sneak in one more question before I go do some reading. Are there any of these (really good) Lyme specialists in Las Vegas, Nevada?

Thanks again. I will go do some reading, and yes, I will come back to let you folks know how it is going--and probably to ask a million more questions. :angel:

P.S. I don't know if it means anything; but numbers 41, 45 and 66 were +positive on the IGM test, and everything else was -negative.

Blessings;
Ava





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