I wrote about my husband's possible extreme herx that started on August 19.

Well, we now have some answers. Lyme is still in the picture but there are two other, even more pressing problems.

First, the paralysis has been diagnosed as Guillain-Barre syndrome. The prognosis for recovery is pretty good (but can take a few years), and in the meantime B still has extreme pain. We are lucky in that he can still walk (with great effort) and has had no breathing troubles, thank God.

Worse, though, he has been diagnosed with lymphoma - we think Hodgkin's - final lab results are expected today.

So, the Lyme will have to be addressed, but the cancer must be treated first.

I would be grateful to hear from any of you with personal experience or knowledge of links between Lyme and Hodgkins, or Lyme and GBS. There is some info on the web about Lyme and cutaneous lymphomas, but this is not a skin thing - he has a mass in his upper chest.

I am in contact with folks on a GBS support board and looking for something similar for Hodgkin's.

I've been keeping an eagle on B's medical care, and while I have complaints about communication and about how well his pain has been managed, I do not have any doubts about this diagnosis. It's a triple whammy. :-(

I just read your post and went back and reread your previous thread. And reread.

OMG

Sometimes the cascade of diagnoses is just so relentless that saying "sorry" just doesn't cut it.

But

I'm gonna say it anyway...I'm so sorry.

What your dear husband and you are going through... You two must be loving each other so much right now!

In spite of the fact that you've gotta be feeling stunned right now, you're doing an amazing job of staying on top of everything.

Way to rise to the occasion, Pattycat!

So smart of you to stay connected to the vast resources available via the net! ("many hands make light work" and all that, ya know?)

One hospital, with a small group of docs, does NOT a universe of knowledge make.

Please tell your husband MANY, MANY people are and will continue to think about him, research on his behalf, keep pulling for him and praying for him.

That goes for you too, Pattycat!

Gotta go do some GB/Hodgekins/Lyme research.

peace and prayers,
andie

I have gone back and tried to read your previous posts to see if I could help. My STUPID computer is acting slow and weird all of a sudden.. so I can't get to some info I need at the moment to help you.

BUT.. I wanted to post this... if my computer will let me. Sorry for being so blunt and short... just trying to say it before the thing quits on me.

Say NO to the Guillain-Barre!

The docs there are herxing your hubby so hard, he could die.

People DO die from severe herxes... and I do have medical reports backing that up.

He needs to stop the antibiotics until his system recovers.. and continue at a lower dose.

If he has the ACA rash.. he has chronic Lyme. There is NO question about it.

(It is a RARE day I will say WHAT to do.. to anyone.. and these folks will ALL tell you that. I am known to only "suggest" things. That means.. with all my heart.. in this situation I am VERY serious about what I am saying! And I CAN back it up with medical reports.. and will.. as soon as possible).

The ACA rash.. which I have and am familiar with... means Lyme... an INFECTION.

PLEASE do not let them go with the Guillain-Barre syndrome treatment.. which may include steroids. VERY BAD TO DO!!

As for the lump...

I am not a cancer expert.. nor will I pretend to be. I have seen folks here and other places, including myself, go through this situation .. only to be found it was not cancer.

What I do know is the lump can be a mass full of spirochetes.. and the lump could be from the herxing (too many toxins rushing thru and clogging up the system).. and the lump can be caused by Bartonella (a coinfection often found in folks with chronic Lyme).

So please watch for these things.. and don't bet on cancer just yet.

Now...

Even the Infectious disease specialists warn other doctors (ID docs) to watch what they are doing when it comes to Guillan Barre. See article below BY infectious disease specialists TO infectious disease specialists.

It says to watch for INFECTIONS as the cause for Guillain-Barre.. and not to write off folks to GB before infections are addressed in full.

It also confirms Lyme has been found in folks who were misdiagnosed with GB... and knowing how ID doctors don't like to admit they are EVER wrong... this is amazing!!!

Again.. sorry..

I can get more literature.. but not at the moment.

May I suggest...

Get hubby stable with pain meds... and get him back to the USA where he can see a LLMD.

Just look at the docs there.. smile.. and say you want to continue any treatment at home... and thank you very much!

To reduce stress for hubby and yourself.. I wouldn't bother trying to prove them wrong or arguing with them.

Just get out of there... and get him help at home.

Since he has chronic Lyme.. a few days or weeks delay won't matter as far as treatment goes... not at this point.

If there is anything we can do.. just name it.

I will research for you as soon as possible.

Just let me know what you want to see.

OK?

Take care of you and hubby. It sounds like you are doing a wonderful job and are staying on top of it.

Good for you! Hang in there!!!

Guillain-Barr� Syndrome Frequently Encountered but Variably Evaluated by Infectious
Diseases Consultants

This winter, the IDSA Emerging Infections Network (EIN) was informed about a
perceived increase of Guillain-Barr� Syndrome (GBS) cases in Los Angeles, San Diego,
and Tacoma, Washington. Overall, 185 of the 245 queried physicians indicated that they
periodically consult on GBS patients. During the period 1 July 1996 to 12 March 1997,
69 EIN members from 25 states consulted on 106 cases of GBS. Cases were reported
from all nine regions of the United States, with the greatest numbers being reported from
the Pacific region (36 cases) and the southern Atlantic region (26 cases).

Only 15% of
EIN members reside in the Pacific region, but their reports accounted for 34% of all
cases.

Putative etiologies included Campylobacter species in 5 cases, cytomegalovirus in
5 cases, HIV infection in 4 cases, Epstein-Barr virus in 2 cases, influenza vaccination in 2 cases, hepatitis A virus in 1 case, hepatitis B virus in 1 case, Lyme disease in 1 case, and Mycoplasma pneumoniae in 1 case.

At least 39 other cases were preceded by an acute gastrointestinal or respiratory illness.

Fewer than half of the respondents had considered the establishment of a preceding
infection to be a priority in their evaluation of GBS patients.

Moreover, there was considerable variation in the tests ordered by those consultants who wanted to establish an etiologic association. For example, only 23 (56%) of 41 respondents ordered stool
cultures for bacterial pathogens, and only 12 (29%) ordered viral cultures of respiratory secretions.

This indicates that GBS is commonly seen by infectious diseases consultants throughout
the United States.

The reporting of more cases from the Pacific region is an intriguing finding. Whether this finding can be related to the incidence of Campylobacter in this region merits further study.

Regardless, infectious diseases consultants may be missing opportunities to diagnose this and other infectious etiologies associated with GBS.

A more uniform and comprehensive approach to the diagnosis of infectious antecedents in
patients with GBS might yield new insights into the epidemiology of this condition.
Copies of the complete report on the GBS query and information on joining the EIN may
be obtained from the EIN Operations Center in Portland, Oregon (telephone:
503-220-8262, ext. 7311).

Here are some links:

Art Doherty's Links on Lyme

Lyme Disease Misdiagnosed as Guillain-Barr� Syndrome (GBS)

Lyme Disease and Lymphoma

Please keep your hope alive!

[This message has been edited by riversinger (edited 31 August 2004).]

I should set one thing straight - after the first dose of Rocephin, B was taken OFF it. You are totally right about this, Tincup, and thank goodness the doctors are on top of it. I appreciate your bluntness, and your urgency.

B was given cortisone in the ER that first night in case he was having an allergic reaction, but not since. I am bummed about this, because it may have worsened the situation, but have to put it down to "**** that happens in the ER."

Everyone now treating B seems to be aware that using prednisone or similar drugs is a BAD idea with GBS. He's getting immunoglobulin now, which helps some folks with GBS and doesn't have any counterindications (I researched that too pretty thoroughly). And he is getting NO steroids of any sort.

Thankfully, no one is saying that he has GBS instead of Lyme. Rather, the doctors are looking for any and all possible triggers. After all, GBS is not a disease, it is a syndrome, and one of its possible triggers is Lyme. Another is Hodgkin's. And unfortunately one can have both.

I just have to wonder if the Lyme somehow set the stage for Hodgkin's ... by mucking around with his immune system.

The lab results from B's chest mass are not back yet, but apparently they are delayed because they pathologists have found Hodgkin's like cells that do not behave typically. So we asked that they keep in mind the possibility of Lyme. Tincup, the tip about Bartonella is an interesting one, and one we will try to convey to the pathologists.

One thing is clear - the skin lesion on his leg is NOT cutaneous lymphoma, and there is no doubt in my mind that it signals persistent Bb infection.

B is in a major medical center, possibly one of the best in Europe. But I still do not have blind faith. Believe me, I will keep researching every evening - including those links you included, riversinger, thanks much. I've got a Ph.D in medical history so have good research skills and no fear of the lingo in either German or English (though I'm no MD - which is maybe for the best!). And while I think the doctors are actually doing things right at the moment, I will keep scrutinizing every step in my husband's care.

Also, I am going to bake him a poppyseed bread tomorrow, because the hospital food is just awful. "Bread" is actually a misnomer - it is a decadent and delicious cake, and a good high-calorie comfort food.

Sorry about your husband. I also had gallium scan for lymphoma a few months ago and was negative. But researching it sounded so much like lyme, that I thought OMG I have that.

Many researchers beleive that lymphoma is not really a cancer at all, but more like a super infection caused by bacteria and viruses. The book Live Right for Your blood type, talks about lymphomas. He says that he sees type o's coming down with this and having trouble fighting it> Type O's he says are hardy against cancer over other blood types and tend to recover with less medical interference.

Seeing this, further makes him beleive that it is viral in nature, as type o's are less hardy against viruses.

Just something to think about. Something that popped into my lyme brain when I was reading your post.

I also met someone awhile ago, who developed cancer after being bit by cat fleas and then RA, after cancer treatment. This could be where bartonella comes in. They never received treatment for lyme or bartonella and kinda of looked at me like I was crazy when I told them this, cause of course they have never heard of such a thing.

You must be overwhelmed by everything, but just some things you could look into further before excepting cancer treatment.

Hope he improves.
Good Luck

HA! I want to say Patty CAKE.. instead of cat! Especially since you are making one and just mentioned it! Sounds delightful by the way.

You sound as if you are doing a grand job keeping tabs on the goings on there. Good for you.

I am glad you mentioned the "syndrome" vs. disease thing.

If I say it.. folks want to burn me at the stake sometimes.

So it's good to know YOU know the difference.

If you need any help.. please let us know.

In the meantime...

Know that we care and we are here so you can share your feelings... or blow up at the situation at hand.. whichever feels right at the time.

Please... as you have time and are able.. keep us updated on the progress.

And do let hubby know that there are about 4,000 members here who are sending their best for his quick recovery.

And tell him Tincup said "hey".

Yes.. that will keep YOU busy for a while... trying to explain it all.

hehehe

Three for three!

1997-2004 I was diagnosed with GBS, Lyme, non-Hodgkins' Lymphoma (Mycosis FUNgoides) and Hodgkins' Disease.

My GBS diag. followed a three year slump that took me off teaching and on my back.

The decline began with slight malaise after 2 wisdom teeth were pulled in '94. I had 2 more removed in 1995, a month after a deer tick bite in Vermont.

From what I've read, GBS has rapid onset, lasting from hours to 4 weeks. How long was your husband's onset? You have shared good ideas.

In 1997 I was unaware of Lyme. My HMO was hard wired to not prevent or diagnose or treat Lyme or alveolar osteomyelitis.

"Don't ask, don't tell" policy.

I was temporarily helped by plasmapheresis (eleven rounds, through neck line and 16 guage needles in two months) but that was not worth the grief. IV predinisone hit like a tank ran over me. I went from chair bound to bedbound, too weak to crawl to the big white telephone to talk to Ralph.

Then my HMO Duck put me on immune globulin, 90 grams a pop. $200 dollars a gram they said, 1 gram per kilo body weight. Eleven sessions, from Aug 1997 to May 10, 1999.

GBS helped more than plasmapheresis but every partial strength gain was swallowed by a full blown relapse. And I felt sicker all the time. In January 1998 my HMO neuro duck said I'd need IG every six weeks for life.
It was chronic. No cure. Idiopathic.

Upset by the living nightmare I crawled off for help. In Feb 1998 an MD(H) and DDS found and surgerically removed osteonecrosis from my wisdom tooth sites. That saved my life. Google search
"bouquot" and "Oral and maxillofacial center".

Then CH diagnosed my Lyme in Jan 1999.

I agree with the advice you have received from Tincup & Co. When my jaw osteomyelitis was in semi check and Lyme under influence of IV and oral antibiotics (beginning May 17, 1999) I did not need IVIG.

IVIG boosts immune system. Add antibiotics and the one-two punch may explain Bill's
herx.

I agree: GBS and Lymphomas may be symptoms of or caused by "other" infections.

I fight Lyme first and cancer second. Can't tell you to do the same but if prednisone's whacked me so hard, what would chemo do?

Keep an eye on Bill's breathing. I went two days without food in '97, got hypoglycemic and suddenly became too weak to breathe. I almost died before help arrived. And tell Bill NO strenuous exertion! That caused me TIAs.

Pro biotics two hours after antibiotics. anti yeast if antibiotics are continued over time. Lyme literate doctor all the way.

Where is his pain? In joints? head? Upper legs? (where I had pain for a long time).

I asked my duck to test for Campylobacter. He said I did not have it because my stools would be loose. MD homeopath test was +pos. He gave homeopath remedy. (TIC gum might help for H pylori, too?)

I am not a doctor but I would be dead had I listened to my HMO Ducks.

Reliable hearsay: An "idiopathic" condition means the patient is pathetic and the doctor
is an i****.

Prayers.

I do believe that EBV and Lyme both have the potential to send the immune system haywire. The "risk factors" for Hodgkin's are poorly understood, but Epstein-Barr virus is one of them. I realize Lyme is a spirochete bacterium, but like EBV it has the ability to hide and lurk in one's system. And Bernhard did show signs of EBV activity in last year's blood work.

Bernhard is fairly stable neurologically but really suffering from pain (mostly in the night). The neurologist spent a lot of time with him today and is going to try several new things by way of pain management. The neuro is also convinced that the GBS should begin to abate once cancer treatment has begun.

Lymiecanuck, I am so pleased that you did not end up having cancer. Here's wishing you steady progress fighting the Lyme.

Neil, I am very glad you replied, because you seem to have had a lot of the same miseries plaguing Bernhard. For him, the onset of GBS was extremely quick - four hours from slight aches in his shoulders to total incapacitation and excruciating pain. His main pain now is in his shoulders and upper back; he also has pins-and-needles sensations in his legs and hands. Pain is manageable during the day, horrific at night (despite truckloads of medications).

But Bernhard has fortunately kept his ability to walk and breathe. I am so grateful for that.

My concern at the moment is that cancer treatment will depress his ability to fight the Lyme. I have no doubt about the correctness of the Hodgkin's diagnosis, but I know that chemo can leave people really vulnerable to infections. And of course Lyme is just that - an infection.

You bet I will tell Bernhard that he's got all of you in his court. And it is a comfort to me, too.

Hugs to you dear people,
Patty

So sorry to hear about this...

Wanted to comment that I have heard certain cancer drugs are used to KILL lyme.

It has to be done really carefully, and has to be given to the right person. Cancer drug will do something to the immune system.

So, possibly ask about this.... maybe one of your Dr's know about a certain cancer drug, or part of one that is used to kill lyme. This way you can target both at the same time.

I have also, I think? not sure here, heard that some? antibiotics kill cancer?, I have a short memory, so possibly wrong here. Check this out though.

High dose coenzyme Q 10 is used for lumps, at the dosage of 400mgs a day. I did this when I had a breast lump years ago, and it went away. I also did some really potent herbs from my ND... to detox the body, mainly the lymph system. Many were cancer herbs, such as Poke root, and others.

You have to be careful I feel with mixing herbs and supps and drugs.... for some it is ok, but for others does not work well...

Also, I would have died many times from herxing had I not cut back the dosage of the antibiotics... I react in an allergy like way with the herxing, swelling and heart racing... swelling of breathing...
mental symptoms... really bad.

Also, I believe for me anyways, getting the antibiotics or any drug I take tested at my ND's... on his vega machine... to see if I am ok with them. I am quite sensitive, I find this works well, then when I am having an allergic herx, I know it is a herx, not an allergy to the drug.

I hope things go well, keep reasearching.

take care,

Trish, the most likely combination of drugs for treating the Hodgkin's is doxorubicin, bleomycin, vinblastine, and dacarbazine (ABVD for short). I will try to find out if any of these have antibiotic properties - certainly bleomycin sounds like abx to me.

Liz, we're in Germany so no direct access, but I will check out the Sloan Ketterling website - I bet it'll have some helpful info.

i think i remember reading that IVIG therapy has been used to treat GBS. and i have also read that this has helped some with lyme.

here is a link (take a look at the "medication" section):
http://www.emedicine.com/pmr/topic48.htm