Those of you that responded to my last posting will remember that he has not been diagnosed as yet and that we are having trouble getting the doctor to seriously consider that it is Lyme Disease.

Her doctor was familiar with my son's case but is not his doctor. They did the same blood work on her to see if she will have similar results as my son.

They admitted that they do not have the means to test for Lyme and that is why my son has not been tested yet.

They said the rheumatiod specialist has that capability(my son's appointment is Nov 5th) and that he is a LLMD. Does that sound right?

Anyway, if her blood work has similar results they will know it is Lyme and that she has been infected.

If not, they think he may have Hodgkins because the doctor had a patient two years ago with supposedly the same symptoms my son has and he had Hodgkins.

Everything I have found so far on Hodgkins does not mention the severe joint pain (specifically knee joint pain) my son has been experiencing.

His symptoms still seem to me to point to Lyme and I am afraid my son and his wife are hoping it is Hodgkins because it is not as scary as it being Lyme.

Has anyone been misdiagnosed as having Hodgkins when it was actually Lyme?

My son is still not taking the steroids the doctor prescribed (thanks to your responses on the subject) but it is tempting for him when he knows it will relieve the pain and that the doctors are telling him it may not be Lyme.

Need your input please.

He had been having severe pain in his abdomen due to his spleen being enlarged. From his symptoms, bloodwork and spleen enlargement, he was referred to an oncologist/hematologist. They told us lymphoma was a possibility. From there he underwent numerous tests including a bone marrow biopsy. His biopsy was normal. None of the diagnostics pointed to lymphoma and they could find no tumor.

He had abnormal blood work, but the oncologist could not make a diagnosis. My husband was a true mystery to him. He reccomended removal of his spleen due to the risk of it rupturing (it was 3 times the normal size).

I remember that day that the oncologist came in the room after his surgery. He told us the spleen was clear and all he could guess was that my husband had a rare blood disorder and that it was taken care of with the splenectomy. They could run millions of tests and lots of money later maybe have a diagnosis, or he could just recover from the surgery and be on his merry way. Within the next year he got worse.

I can't tell you how many times my husband wished it was Hodgkin's and not lyme.

My only advice from this experience is that if the signs don't point to anything but lyme, then odds are it's lyme.

About the Lyme test, you can order the test kit yourself from Igenex. Bring it to your doctor and request the IgM and IgG western blot.

After years of runaround from the doctors, this is what we did. Even after his test results came back positive, we had to find a new local doctor that would accept them and work with us with an llmd.

Because of the joint pain, I'm thinking Lyme.

I agree with Rita et. al. You have described a situation needing a Lyme Lit. Dr.

There are good posts on this subject. Have you searched them?

In Jan 1999 a LL Dr. told me I had Lyme. The HMO docs denied it, suspecting instead that my lag rashes were T cell cutaneous Lymphoma (non Hodgkins "mycosis fungoides").

Today, five years later, I look back at a combined three years' of IV antibiotics. My Lyme is better and my leg rashes are almost gone.

But June 7, 2004 a surgeon removed a plum sized lymph node from my left armpit. The Path lab "totally shocked" found no evidence of NHL but did not respect my request to send a piece of the Lymph node to IGeneX.

Instead they said some node lymphocytes were consistent in appearance with Reed Sternberg cells (diagnostic for H.D.). So my HMO onc ordered a bone marrow biopsy (it was -neg).

I have heard of cases where HD symptoms went away after persons were treated for Lyme.

HD and Lyme may cause spleen and lymph node enlargement, fatigue, muscle aches, itching, rashes and drenching night sweats.

I too have not found a link between HD and joint pain.

HD is diagnosed via detection/biopsy of an enlarged lymph node. Stage I is 1 enlarged node. Stage II is more than one.

HD at all stages can be "cured" by chemo but that may cause other evils and "cured" HD may return.

Mfrfr: Before they went after your hubby's spleen did they look for enlarged lymph nodes? (A PET scan can confirm.)

In her Widening Circle, Polly Murray said she had 3 chemo sessions but stopped due to fatigue. I also may be too weak for MOPP chemo which my HMO onc recommends.

Of course it in not advisable to do chemo if you have a serious infection. Which my HMO will not admit in my case. So is difficult situation. I have Rubra vera, for which I get phlebotomies.

If more Lymph nodes enlarge I may consider MOPP, less prednisone. HD tends to be fatal. Lyme just makes you wish you were dead.

Neil