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Hi, everyone, I have been away for awhile, hope everyone is doing OK! I finally talked my husband into getting tested by Igenex because he has been getting more fatigued, having breathlessness, wrist, ankle, knee, neck pain, head pressure, dizziness, and strange rashes, not the bull's eye, but just rough raised rashes all over his arms, back, neck, and face. He agreed to finally get tested by HIS doctor, who knew nothing about Lyme (of course). Friday my husband called the office and they told him the results were normal, he requested a copy of the report, so that I could read it. I have no idea why the doc would call this normal and say he didn't have Lyme other than he doesn't want to treat it, or he's a complete idiot!! Here are his results:
IGM:
Igenex Positive
CDC Positive
18 kda +++
30 kda ++
34 kda IND
39 kda +
41 kda +
83-93 kda IND

IGG:
Igenex neg.
CDC neg.
31 kda IND
34 kda IND
39 kda IND
41 kda +++
58 kda +

IFA IND

I told him that he most definately has Lyme and his doctor is wrong. I don't think that he is completely sure that I am right. What do ya'll think? Well, no, I am not a doctor, but I think I know more than this doctor does about Lyme. The doctor agreed to order the test because I had the kit with us, but he was joking about it and told my husband that when the results came back neg. to come back and he would find out what is really wrong with him. (He said it's sleep apnea, and wanted to send him to a sleep center) My husband wants me to sit down with his doctor and explain the results to him. I am a little uncomfortable doing this because I feel that he still won't understand or agree to treat my husband. Dr. F in Louisiana has a 4 month waiting list, so we won't be getting into see him any time soon. As of right now my husband isn't completely convinced that he has Lyme, because his stupid doctor said he doesn't! Both my son and I have Lyme, and he has the same symptoms. Unfortunately he is in denial, that's why i need y'all to help me! Please the more people he hears it from the better!! Thanks everyone, Sarah
Hi Sarah. I cannot believe this doctor said your husband's test is negative when it is even CDC positive! This is insane.

Below is the breakdown of the Western Blot. The IgM tests for a more recent infection and the IgG a longer standing one.

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

Band 41 is often the first to show, and his are positive. Bands 31, 34, and 39are Lyme specific bands and his are either postive of IND.

He definitely needs to see a Lyme doctor and get tested for all the co-infections. Babesiosis can cause some of the symptoms you list. I have heard that Dr. F. does not treat aggressively enough and does not test for co-infections. I do not know if this is true. I hope he can see someone soon and start treatment.
Ticker, thanks for the reply. I know I was completely surprised that he was CDC positive. I pretty much knew that he had Lyme, but to be CDC positive is even more proof. I think maybe it's because the IGG is CDC neg. maybe the doctor expects both to be positive, this is what happened to me 8 years ago, my IGM was pos. IGG neg. and I didn't know anything about the bands, I just took the doc's word that they both needed to be positive, I'm not going to let my husband fall into this trap and become as sick as I am. What do you know about the IFA? Thanks for all your info, Sarah
Sarah, This doctor said "when the results come back negative, come back and I will find out what's really wrong with you." This is not a good sign. Either he had no intention of acknowledging lyme as a possibility right from the beginning, or he is so shocked that he was wrong that he simply can't admit it. Those results are so positively positive, it's a no-brainer.

This is the kind of poor care that kept me searching for help for over 20 years. Knowing what I know now, if I ever came across a doctor who spoke to me like that, I would get a new doctor even if it did come back negative because that kind of talk says a lot about him.

I don't know which is worse, arrogance or ignorance.
Definitely get a new doctor soon! I was positive with less than that, because I had one band that was specific for lyme disease. My doc says the only way you can have specific antibodies to lyme disease is if you have or have had lyme. Also, the thing that really made me believe is when I tested positive for other coinfections. I had the small rashes over my body and a lot of the symptoms you're describing, dizziness etc. I think the coinfection that might be hurting me most is bartonella. Maybe if he gets tested positive for other coinfections he will believe. Without that, I would have also been suspicious, but it's too much of a coincidence to deny once you are positive for coinfections also. Good luck and get a new doc! I had to go to 4 regular doctors, a neurologist, and a physical therapist before I found a good one.
[QUOTE=sleeperwoken;3115270]Sarah, This doctor said "when the results come back negative, come back and I will find out what's really wrong with you." This is not a good sign. Either he had no intention of acknowledging lyme as a possibility right from the beginning, or he is so shocked that he was wrong that he simply can't admit it. Those results are so positively positive, it's a no-brainer.

This is the kind of poor care that kept me searching for help for over 20 years. Knowing what I know now, if I ever came across a doctor who spoke to me like that, I would get a new doctor even if it did come back negative because that kind of talk says a lot about him.

I don't know which is worse, arrogance or ignorance.[/QUOTE]

Sleeperwoken, How are you? Yes that is what the doctor said to him. My husband has been going to this doctor for 25 years and basically has never had anything wrong with him until recently. He usually only saw him when his kids were sick. The doc even delivered all 3 of his kids. I had never met the doc since we have only been married 2 years, and he hadn't seen him during our marriage. the doc asked me what I did to him, and said I was turning him into a hypochondriac. this was before the test results were back. I have the names of basically every LLMD in the country, but my husband won't let me make him an appt. because he has no vacation time (they only get 4 days a year which he used to go to CT with my son and I in January) and they don't get paid sick days. If he takes time off he can't pay our bills or his child support which is $860 a month plus ins and 1/2 the medical and dental bills. It is so high because there are 3 kids, not because he makes alot of money. His ex-wife has no sympathy, she has threatened to take him to court for being 2 weeks late paying the ins. he has never missed a child support payment ever once, he pays her before he pays our bills. Last month we sold our second car to pay his kids child support/ health ins. dental and medical bills. No we were not behind, it just really adds up each month on 3 kids. We have thousands of $ in bills from my son and I going to our LLMD's in CT. If my husband doesn't work we can't make it. Well actually we aren't making it even with him working. This is why he is in such denial. He knows he needs to see an LLMD, but he feels that he can't. the closest is Dr F in Pineville,LA. 6 hours away, but like I said 4 month waiting list. I did everything i could to make sure my son got all the proper tests and treatments when I found out he had Lyme, by charging it all to credit cards. but I cannot force my husband to do the same for himself, because he knows if he sees doc's and gets treated than he cannot afford for my son and I to keep being treated. I feel so bad for him, he has so much on his shoulders, and I am unable to help him. Sorry for all the whining, I guess it was my turn to be pathetic!!!:( Sarah
Thank you everyone for your suggestion, and for your caring words. We are going to sit down with the doc Friday afternoon to talk about the results, and I am going to print up numerous papers on the disease, including Dr. Burrascono's. I am hoping that will help. I also called the Igenex doctor and he is suppose to return my call, since the results were CDC/IgeneX positive it needs to be reported to the CDC here by his doctor. The more reported cases we can get in our area the more chances we are of getting poeple diagnosed sooner instead of later. Thanks everyone for all your help. this board is such a blessing. Sarah





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