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My husband has seen 2 of these doctors.

He saw Adler-Klein last year referred by his neurologist after 2 years of lyme like symptoms, MRIs showing nothing wrong, a spinal tap that was normal and 2 false positive lyme tests. Adler-Klein said that she did not think it was lyme but after another western blot came back with false positive she said that should not happen more than once and started him on 28 days of IV Rocephin. PICC line inserted and 28 days later there was no change so she said it could not be lyme. That weekend we got married and went on our honeymoon!

When we got back from the honeymoon both Adler-Klein and his neurologist aggreed it was not lyme and said they did not know what it was but it was not lyme...

Then we went to see Dr. Stephen Philliips in Wilton. He was sure it was chronic lyme with a side of bartonella. He got a positive Igenex western blot and then started my husband on a doxy cockatil and felt that he was seeing some results when there were herx-like reactions but felt that a stronger cyst popper might be better and started him on 6 week courses of Mepron/zithromax. He did one cycle and got worse and worse with each week. At week four he got fevers, chills and worsened symptoms and new symptoms. Then he started another 6 week course because Phillips thought he was definitely herxing. This is when his CD57 came back low (30 - normal is 60>120). Dr. Philips said it was chronic lyme.

This is when we went to Dr. Eileen Hilton for a second opinion. She was referred by a friend of my mother in law who was treated by Hilton and was now better. She looked at all of his test results and looked at us and said "You do not have lyme disease. I can't believe that anyone treated you so aggressively with no proof! The Igenex western blot does not help me because cloistered nuns who have never been outside come back positive with Igenex. I do not use that lab. We have found that some of the doctors who use stand by these tests own the company! The antibiotics are what is making you sick. You need to get off of the antibiotics and then reassess your situation when your system cleans out."

I asked her what she thought of the low CD57 level and she said "Nothing..."

So her suggestion was to start eating better and exercising and stop taking the antibiotics. We were totally shocked by this. But my husband was doubtful of the chronic lyme diagnosis the whole time and he was always uneasy about the long-term antibiotics so he went off of them...that was on August 16th. Then the article was in the NY Times on August 23rd.

We are way beyond confused!
Megge-

I am very confused also,. What would make dr. Hilton think that your husband does not have lyme? What DOES she think he has if not lyme. and honestly, I am torn about the Igenex controversy. Quite frankly, many of the other labs don't pick up many cases of lyme, but many drs don't use Igenex, so they are doing a disservice to their patients. I have known many people test negative through Igenex and lyme has become a clinical; diagnosis anyway and the drs dont always have "proof". So sorry your husband is suffering so much!!

-Nancy
[QUOTE=gerribear]From personal experience, Dr. Debra Adler-Klein told me that after having a month of i.v. Rocephin, I was "CURED" of Lyme disease.....even though I still had symptoms on her exam, especially with balance (or rather, lack of it) and constant Herx'ing..... :nono:[/QUOTE]

She told us after 28 days with no positive result that it could not be lyme or else something would have happened...he would feel better.

Then when we went to see Hilton she said that it definitely wasn't lyme because he wouldn't be sick anymore if it was lyme after all the antibiotics he had had - he would have been cured! She had patients in wheel chairs who were walking after a month of antibiotics! Lyme she can cure! That doesn't worry her...its not being able to find anything. But either way - it's not lyme! She was a bit arrogant about it to be honest.

[QUOTE]Megge-
I am very confused also,. What would make dr. Hilton think that your husband does not have lyme? What DOES she think he has if not lyme. and honestly, I am torn about the Igenex controversy. Quite frankly, many of the other labs don't pick up many cases of lyme, but many drs don't use Igenex, so they are doing a disservice to their patients. I have known many people test negative through Igenex and lyme has become a clinical; diagnosis anyway and the drs dont always have "proof". So sorry your husband is suffering so much!!
-Nancy
[/QUOTE]

What did she think it was? oh, that several side issues could have led to the problems he was having. And if those issues are addressed he will feel better. The fatigue and sleep problems were due to the restless leg syndrome keeping him awake at night which he could take a pill for. The headaches could have been neuralgia (which was the original diagnosis made at Columbia neurology) which was never helped by the nerve blocks and physical therapy he had. And his other numerous symptoms which had worsened over the last 4 months had been due to the antibiotics! But this didn't address the other neurological stuff that was going on. It all started with tingling sensations at night keeping him awake, then dizziness and other vision fuzziness, but that was all neuralgia? I don't think so. But in the meantime my husband doesn't know who to believe and he just always feels like crap...Anyway I am going to sleep now! Goodnight, Meg :wave:





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