Present IgM P23 ab, yet told negative for Lyme... confused... PLEASE HELP

[leilajax]

I have been suffering for severe Lyme related symptoms (general constant flu like symptoms, fatigue, heart palpitations, joint pain, general ache, cold extremities, hot/cold intolerance, enlarging lymph nodes, numbness/tingling, tremor, headache, etc...) that have been getting progressively worse for a couple of years and was finally tested in September of 2012.  All IgG tests were absent.  IgM P41 and P39 were absent.  IgM P23 was present/abnormal.  I had never seen these results until the doctor's office was unable to fax requested labs to a specialist and handed to them to me to deliver.  I know that it reads that 2 of the 23,39,41 bands must be present to be considered positive, so that's why my doctor told me that I was negative for Lyme.  I just did a little researching and read on quite a few boards about others' stories of being misdiagnosed because they were told they were neg. due to IgM P23 being the only ab present.  I also have read that IgM P23 is an ab ONLY linked to Lyme, so it's the most important IgM for a positive Lyme diagnosis.  However, I have also been diagnosed with Hashimoto's thyroiditis, which is an autoimmune disorder of the thyroid.  Many of the symptoms of Hashimoto's and Lyme are the same, so it puts me in a dilemma.  I know that autoimmune disorders can affect the IgM results, however my RA and ANA are negative and though I have hypo thyroid symptoms my thyroid levels are normal and my endocrinologist thinks that some of my symptoms don't match up (lymphatic pain and swelling, severe weight loss, discoloration of vessels in hands).  "I think you have something else going on."  Is there more testing that I can have done or do you not think that I have/had Lyme.  I would love your input, as I value patients opinions more that doctors these days.  Thank you in advance!!!

[JackieCalifornia]

Here are four organizations who may be able to help financially:

1 -- http://www.needymeds.org/indices/newuser.htm

2 -- http://www.patientassistance.com/

3 -- LymeTAP -- financial assistance for testing -- LymeTAP [dot] com

4   -- LymeLight Foundation -- financial assistance for children and young adults in Lyme diagnosis and treatment
website:  LymeLightFoundation [dot] org
==================================
You could also find a Lyme specialist you want to see and explain your situation to see if they can cut you some slack, but docs need to make a living too.  I doubt the docs would pay for the testing, tho.  You could ask a family member or friend to make the calls for you, if you are not feeling well enough to do so, and I'd even put in a short summary of the ineffective 'treatment' you have had so far and what that has done to your financial situation.  That might get you some compassionate care.

I'm sorry to hear about your doc experience.  Lyme is a hotly disputed area in the medical profession, and as a result, there are docs who take the path less travelled, and then there are those who drive off the road and into the ditch.  Sounds like your most recent doc might live in the ditch.

Some specific comments on your post above:

"I had an initial consult with Dr. _____ here in North Carolina & he charges a fortune - I can't remember how much it was exactly but I think it was over $1,000 just for the initial appointments which included labs & meridian testing."

You might think about filing a complaint with the state medical board.  It's docs like that that cause other docs to think all Lyme specialists are quacks.

"I have been to an infectious disease specialist and he was a total nutcase - he had no answers for me whatsoever. He wasn't even willing to consider Lyme as a possibility considering I had already been treated with 3 courses of doxy."

Actually, that's the reaction I would expect from an infectious disease (ID) doc. As a group, their standards for diagnosis and treatment of Lyme are a couple weeks of doxy, and if you're not cured at that point, then you have 'post-Lyme syndrome', meaning an over-reaction of your immune system to a now-cured illness.  

A true Lyme doc, however, knows that it means you are still ill and the treatment was ineffective, because Lyme bacteria have the ability to hide in the body in areas that the immune system and antibiotics cannot easily reach.  When the treatment stops after a short time, the Lyme bacteria come out and party again, so the usual 10-14 days of antibiotics usually don't work against Lyme except very very early in the infection, before most of us know what we have.  

In addition, Lyme bacteria also have a long reproductive cycle so that its cell membrane is disrupted less often than that of other kinds of bacteria, and since it is when dividing and the cell wall is split that the antibiotics can most easily kill the bacteria, it takes a longer course of treatment than other, more usual bacterial infections.  Some of those factors may have interfered with your doxy treatments.

Thyroid dysfunction is not uncommon with Lyme.  I had it, and took thyroid supplements when I was first in treatment with a Lyme specialist, but as Lyme was killed off, my own thyroid function got back to normal very quickly.  You might find the same, but that's another reason to find a real Lyme doc.

You say, "My GP wanted to put me on antidepressants yet I'm not depressed - only frustrated!"  I hear you.  The GP sounds like he's just run out of ideas.  

In your situation, I would email to   ---- contact [at] ILADS [dot] org ---- and tell them where you are located and how far you can travel.  ILADS is the main voluntary organization for MDs who take a progressive view on Lyme diagnosis and treatment, and they can send you names of Lyme docs near you.  It's no guarantee that the docs registered with ILADS are great docs, so you might get a dud, but keep trying.  There is a well known Lyme specialist in NC, I believe,  a Dr J.  Will send you his name in a private message.

You say, "I have had some success with colloidal silver but ended up running out of it & am now exploring liposomal vitamin c.  Has anyone had any success with herbal or natural treatments?"  I don't know anything about colloidal silver, but I do know that getting a complete diagnosis of what you have (to confirm Lyme and any other infections the same ticks may have brought you) is the first and best step I can think of.  

I can understand you are burned out with docs, but you just need the right doc who will diagnose you fully and give you appropriate antibiotic treatment.  Vitamins won't hurt, but they don't kill bacteria like Lyme.

I just googled -- north carolina lyme disease -- and got links to many organizations that may be able to help you find an affordable doc who knows what he's doing.  Lyme is a fast-changing area of medicine, so do beware of quacks, but don't let it stop you from finding a GOOD doc and getting well.

Please let us know how you do and if we can help further.  Take care!  Best wishes to you for renewed health --

[AngieUSMC]

I am in NC, could you please message me with the name of the doctor. Thank you!!!!!

[cave76]

I've never had any success with herbs or supplements. And I tried a LOT of them before I finally had to admit that antibiotics are the drug of choice :)

I'd be embarrassed to say how many alternative 'things' I tried---- some really bizarre, like Tachyonized Water. LOL

Only when I started abx did I start to feel somewhat better. But it was a really long haul.

[cave76]

It's a shame that Lyme specialist's often have fees that are out of range for so many of us. There are some that aren't, but I don't know of any myself.

However, if that initial appt included lab tests, then his actual office visit fee is less.

Meridian testing? If that was also included in the initial visit fee---- then a person might ask to not do that. That's not a test that I would perform, myself.

If a person has insurance (and most Lyme specialists don't accept it) you are entitled to an invoice that you can send to your insurance company for reimbursement. I think it's a law that a doctor has to do that. Be sure the diagnosis code and procedure code is on it.

Your three courses of doxy, for one month each, is woefully under the recommended time that ILADS suggests in their guidelines. Many of us have to stay on abx for way longer than that.

But if you're in a demographic that allows for it----there are Patient Assistance Programs available for helping with the costs of the medications. Of course a doctor is needed to sign off on it. Search on Google----- there's a lot of different ones.

[christi828]

Thank you to the foregoing contributors.  I also have every symptom mentioned in the first post as well as positive IgM P23 ab, yet was told that I need at least 2 positive bands to be considered positive for Lyme.  I was also positive for Rocky Mountain Spotted fever and the IgM antibodies even today continue to increase on my labs.  I have been on 3 courses of doxycycline for one month each and although I feel better while taking it, the symptoms typically return soon after.  I am 53 years old & feel like I have the body of an 80 year old.  My joints and muscles ache all the time, I have chronic swollen glands, low thyroid function, brain fog, numbness in the left side of my face.  It feels like something is destroying me and my life from the inside.  I am now unemployed so I cannot afford significant out of pocket costs.  I had an initial consult with Dr. Pittman here in North Carolina & he charges a fortune - I can't remember how much it was exactly but I think it was over $1,000 just for the initial appointments which included labs & meridian testing.  My friend told me at the end of the day her mother spent over $10,000 with him & while she felt a lot better during treatment as soon as she stopped all the symptoms returned.  She had to stop treatment as she could no longer afford it.  I have been to an infectious disease specialist and he was a total nutcase - he had no answers for me whatsoever. He wasn't even willing to consider Lyme as a possibility considering I had already been treated with 3 courses of doxy.  The problem with Lyme symptoms is that the symptoms are so fragmented so you can end up going to a myriad of specialists and no one puts it together.  The endocrinologist was not willing to put me on medicine for thyroid because my thyroid dysfunction was "mild."  My GP wanted to put me on antidepressants yet I'm not depressed - only frustrated!  They offer no explanation as to why my glands are chronically swollen and why I always feel like I am sick with mild flu like symptoms.  I wish and hope and pray that I can find a doctor that will take me seriously and that I can afford to go to.

I have had some success with colloidal silver but ended up running out of it & am now exploring liposomal vitamin c.  Has anyone had any success with herbal or natural treatments?

[Beanie2000]

my doc (holistic, lyme literate and against long term antibiotics due to the inevitable gut issues) prescribes these herbs:  Enula and Samento.  they will make you herx, though, so be careful and be ready to detox as much as needed.  transfer factor multi-immune from researched nutritionals is also pretty good - again, you will herx, so be prepared!

[JackieCalifornia]

Doxy is commonly used early (meaning a few weeks) in a Lyme infection, but from what I read, it may not be effective in a longer term infection.  That's where a Lyme specialist (LLMD) could advise.  Others here may also have comments.

Hang on -- you're making progress --

[leilajax]

Thank you all for your response!  It was such a godsend that I reviewed and questioned these labs last night, as I had an appt with a holistic md today.  He agreed that my Lyme labs were questionable and that I probably am suffering from hashimoto's as a result of an underlying Lyme infection.  He prescribed 100 mg of doxy twice daily for a month (2 if need be) and also prescribed naturethroid (which all other mds have denied for 8 months now).  I am nervous though to take it because my weightloss is just terrible (93 lbs and dropping- 20 lbs under target weight).  He promises that it's such a low dose (1 grain) that I will be fine.  As far as the doxy goes, is this proper treatment for Lyme or should I still get a second opinion?  Please god let this help me!!!  I woke up last night due to some recent bought a of hives that my pcp wanted to give me prednisone for (glad I trusted my gut and denied it or things would be much worse) and the joints in my feet were excruciating!  I could barely walk!  Today my head is throbbing in pressure and my sinuses are a mess!  Please keep in touch and help me pull through this!  I will check out all of the suggested sites.   Thanks again!  Anymore advice on on meds and vitamins would be wonderful to hear!